Donovan's Transplant Journey

One Year Later....

2009-09-14T00:00:00.002-06:00

Hard to believe we have all come through the first year of this journey!

Donovan is still breathing with borrowed lungs,and each breath continues to amaze. There have been bumps and hurdles, each challenging, each overcome a day at a time.

Life isn't perfect, we have traded a fatal illness for a chronic one, as explained when we first checked out lung transplant as an option last May, (not realizing how soon we'd qualify)...but perfect or not, it is life, and life is good!

Since I last blogged, Donovan has completed a summer as a camp counsellor at Candle lake. What a great opportunity this was. He was able to gain confidence and strength while building into the lives of kids and young adults. While he didn't rest as much he could have, I'm sure he wouldn't have changed a thing! He formed great bonds with friends, and had a million memorable moments. We are so happy for him! He even took up a new sport, skim-boarding!

The summer, however, left Donovan with a lingering cough, which didn't respond to 2 rounds of oral antibiotics. A CT scan at the end of August revealed pneumonia in his left lung. This didn't show up on X-ray weeks earlier, so I hope we caught it before it becomes big trouble. We are on our 3rd week of IV to treat this pest...and it is slowly responding, but the drugs have laid donovan quite low...little appetite, fatigue, the usual reaction to super-strong drugs. A follow-up check in a few weeks will hopefully prove the bug gone. A side note...his lung function two weeks ago, a whopping 95%!!! yay!!!

A whole year...another birthday, Donovan now a man of 21! What can be said, except a heart-felt thank-you, for prayers, for friendship, for the hands that helped and the hearts that cared. We couldn't have done it alone...

While we face another year, each day is lived with the realization that it would not have been possible without the gift that gave him life...and each day, whether good or not so good, is one more we would not have had without that gift. I can't at this point imagine how we would have coped had lungs not become available that day, one year ago. So glad I don't need to dwell on that possibility.

I have learned so much...how to live in this moment, take it and embrace it, it is a moment I won't have again...and this makes each day with Donovan is a good one...whether we are in the midst of medical issues, or kicking back on a beach.

Once again we head into fall. New schedules crowd the calendar squares, and fat tomatoes are turning a lovely crimson in my garden box. The slightest hint of gold etches trees in the park. Darkness falls a few minutes earlier each night, even thought the warmth of summer thankfully lingers on. Fall is a season of transition, marked by glorious colors and a new rhythm as life picks up and carries on after the lull of summer. It beckons us to slow down, breathe a little deeper and feast on what is freely given to enjoy all around.

Fall will always be, for us, a season of miracles...although our second year of transplant awaits,an open door into the unknown, for today we remember a gift, freely given, one that has seen Donovan through, and made believers of many.

May each of you remember the everyday miracles in your life, whatever they may be...just as we give thanks for this day, and all those leading up to it. And to our donor family, who no doubt mark this day with heavy hearts, we pray for comfort, and for them to know a little of the joy they have given others.

Brimming with gratitude,

Love,
Beth

Whew!!!

2009-03-14T10:04:00.002-06:00

Okay, a collective deep breath! Turns out, it's only a cold! A narrow escape from U of A hospital yesterday. Donovan slept almost around the clock, slept most of the trip to Edmonton, then awoke feeling soooo much better, and looking tons better too, I might add, despite our early appointment time. The main thing was his throat being much less sore, so he could actually do his "blows". The pulmonary function tests indicated that his lungs were still fine, 90% in fact, down only 1% from last time.

On checking in with x-ray, they were able to do his CT scan at the same time, instead of having to wait till his 1 pm appointment, so that was a bonus. His CT was again improved, but that nasty little fungus isn't all gone. So the inhalation treatments continue, but we can handle that, for now. The drug takes 15 or so mins. to complete, and is irritating on the throat. The dr. says that at this point, 3 months after the start of treatment, it is difficult to say what is fungus on the pictures, and what is scarring from the infection. Even though there will be scarring, the "proof is in the pudding" when the breathing tests show Donovan's lungs to still be 90%, while fighting a cold!!! I think we can live with that!

As for Donovan's incredible "Shrinking" act....losing 1-2 lbs./week, they took him off one drug, and want to wait and see....there is a drug he could take to stimulate his appetite, but they are reluctant to start it yet. So, we'll keep an eye on the scale, and keep passing the plate to Donovan, who celebrated yesterday's great appointment with a Double Whopper! Hopefully this will turn around for him, and the numbers will go up!

We're 'kicked out' for 6 weeks now...so if we're back before then, it's strictly for "cuddling" reasons...our adorable little Elijah, and of course, his parents!!!

We made our way to Katie's house after visiting with the docs, and attended a baby shower at her church. Elijah tolerated all the passing around until the very end, when he displayed his great lung capacity for one and all to hear!!! A little overtired, I think. He's grown some since we last saw him, but sure hasn't outgrown the ability to charm one and all! We also had the pleasure of meeting lots of Katie's inlaws, and realizing just how loved they and their baby are!

Well, off to Leduc (Katie's) for more Nana-time, and also to the mall to shop with Amy. The weekend goes entirely too fast...we hit the road for home tomorrow.

Enjoy our wonderful break in weather...surely spring is coming, and thank-you for your prayers and part in our narrow escape from hospital!

love,
Beth

Life on a Tightrope...

2009-03-12T13:10:00.003-06:00

Walking a tightrope is sometimes how I feel what life is like post-transplant....and on days like today, it gets a little scary.....

Donovan began to complain of a sore throat on Tuesday. Yesterday was better, today he is definitely sick. The most concerning part of this is the colored mucus he is coughing up from his lungs, and the pain on coughing. His throat is much more sore. Good thing we have an appointment with the docs in Edmonton tomorrow. This is our first illness (other than the fungus) since transplant, and the unknown is always intimidating and anxiety provoking.

So, we are packing up and heading out. We can expect a bronchoscopy, a CT scan, bloodwork, pulmonary function tests, etc. etc. We can also expect a hospital stay and IV drugs for a couple of weeks if this is a bacterial infection....I hope not, but I'm being realistic.

I would ask you to please pray that this infection is only viral, that it responds quickly, and does no damage to Donovan's precious lungs!!!

We also have a baby shower for our new little Elijah, tomorrow night at Katie's church. I sincerely hope we are able to attend (Amy & I anyway...)

I will update here as we figure out what the plan is. Laurier has begun yr. 2 of his journeyman's (carpentry) course this week, so is up to his eyeballs with schoolwork for the next 2 months. He is coming with us, but has to be back Monday....life is never dull it seems.

Thank you all for your love & support,

Beth

Buds and Blossoms

2009-02-26T21:40:00.003-06:00

It's been a while since I sat to chronicle the happenings in our life. And there are a few things to mention...

First of all, Donovan has been well, and we are always happy to mention that. He's been working hard since his checkup two weeks ago...exercising, taking his meds and eating!!! The only trial he has experienced has been his weight loss. His blood sugars tend to trend downward rather drastically after his morning exercise session and we think that his metabolism is revving too high, burning far too many calories and resulting in weight loss. He can't seem to keep up with his body's need for fuel to be stored for later...just the opposite of my problem!!! He has lost a few pounds since the IV treatment of his fungus and the effect it had on his appetite..so we'd like to see this turn around. We are awaiting an appointment with a diabetic specialist and will hopefully sort this out.

And...we are very happy to announce we are now grandparents to Elijah Kurtis Drader, son of our daughter Katie and her husband Kurtis, born February 18,2009 at 6:10 pm, weighing in at 7lbs 9oz. He is off the charts on the cuteness scale but we are a little biased. He has a full head of dark brown hair, and large eyes, wide open from birth as if to say, "what's all the fuss about?" There was a little floor-pacing on the part of a certain Grandma during the whole birthing process...which was over 24 hrs. from start to finish, but he arrived none the worse for wear, which is more than can be said for that certain grandparent. What an exhausting process!

Katie & Kurtis took their little boy home less than a day after birth, and he's been ruling the roost since. They're both a little on the tired side, but did manage to go to church just 3 days later, so I think they're doing all right. Elijah's arrival gives us one very good reason to make the trek to Edmonton a little more frequently!!! What a tremendous blessing, for which we are so thankful. Uncle Donovan was on hand, camera flashing constantly to take in the first hours of the little guy's life. We managed to get in a few days of cuddling before having to return home for less exciting things like work and school. Thank goodness once again for the technology of Skype, which will hopefully keep us closely connected between in-the-flesh visits! We have another appointment with the transplant docs on March 10, so we hope to make a few days visit and take in some baby cuddling again.

This has certainly been a season of extreme emotions for us. Marveling at baby Elijah's perfect fingers and tiny toes, his round, pink cheeks, the velvet of his newborn skin with its intoxicating scent brings home the knowledge that he is God's masterpeice, as are we all.

The tears flow freely with gratitude that Donovan is alive to meet his little nephew and see the circle of life complete in this next generation. Our double-lung miracle will be revisited each time a milestone occurs in our lives, the welcoming of a new family member, the blowing out of next birthday's candles, greeting each season in its turn...for these things we utter a prayer of thanksgiving and realize the sanctity and preciousness of life, the privilege of an unbroken family tree, gratitude for a new little bud.

Winter is blowing hard once again just outside the front door tonite. Perhaps this is its last frosty breath, one final foray into the -30 range. We welcome early mornings now with a dim glow of daylight instead of the pitch black that makes cold so much colder. Supper is eaten before the sun winks below the horizon in a scarlet blaze...the lengthening daytime gives us all a little more energy, time to plan for a summer we will try to make the most of...bikerides by the river, fishing (for sure!),watching buds blossom in our flowerbeds,and lots of walks through the park with our faithful Scout!

We are dreaming of summer to come on this cold, cold day, but grateful never-the-less for these hours, these days and weeks together, for the miracle of new life, for the miracle of each breath!

Wishing summer in your heart this winter night,

Beth

In and Out!

2009-02-11T21:48:00.002-06:00

Donovan's first clinic visit as an out-of-province visiting patient was everything we hoped for and more...

Laurier took him yesterday to Edmonton, and they had a CT scan bright and early at 7:30 a.m., followed by bloodwork and then the docs. Well, Donovan's lungs continue to rock! His FEV1 was 91%!!! Fantastic! He reprots that he did have a higher blow, (93%) but he couldn't repeat it. During the test, the patient sits in a little booth, kind of looks like a gondola booth, and then blows into a device that is hooked to a computer. It takes all kinds of measurements, and they print out the most consistent one. Anyway, his new breathers are doing their job, and we look forward to even higher scores. They can improve up to 3 years after transplant if all goes well, and it will, right?

His CT scan showed improvement as well, not total irradication of the fungus yet, but we'll take improvement. He has to do another month of inhaled treatment for it, but hey, its not IV and its not done in hospital...so that is good news as well.

The best part of today was being kicked out for a whole entire calendar month! Freedom from all things medical in Edmonton!!! hallelujah! And no offense docs, but we won't miss you a bit!!! The only reason we'll head west in the next while is to make Donny an uncle and me a Grandma!

The snow is softly falling leaving a field of diamonds glinting in the moonlight as I sit here tonight in my cozy kitchen. A candles flickers softly. I can hear the cat padding down the hall, and Stephen is strumming his guitar downstairs, preferring that to his homework assignment, it would seem. I glance at the clock, counting the hours until I'll hear Laurier's car, the crunch of it's tires in our driveway, and my heart will be filled as I see Donovan's lanky figure toting the suitcase that was packed for a longer stay in Edmonton, just in case, crossing the threshold of home.

Spring is coming, bringing with it the promise of new life. We have come through fall and winter's grip is slowly loosening its hold. Each season in its turn brings challenges and happiness.

Truly, "to everything there is a season, and a time for every purpose under heaven."

I wish you all the peace of knowing God through each season in your life, and thank you for seeing us through the harshness of ours, and celebrating Donovan's new life.

Love,

Beth

Home is where you hang your heart...

2009-02-02T23:14:00.002-06:00

We are home!!! I can't believe it...even though the evidence (many boxes of meds, suitcases in need of unpacking, dire fatigue and "car lag") are all around. Though we know the journey continues, it seems as though we have climbed a mountain, and at this point are gazing at the breath-taking view from the summit. And that view is what we call home. The place we come to hang our hearts.

We arrived home late last night. Donovan traveled with friends Brendan and Chantal (thank you guys!) and dropped them in S'toon and continued on here. I travelled with friends Connie & Randy (thank-you, thank-you) who graciously allowed me to pack the back of their van to maximum capacity with all of our belongings and Scout! When it comes to packing a vehicle, they have skills! We left melting temps in Edmonton for the icy and frostbitten land of Sask. I must admit, the only thing I miss about Alberta at this point is the balmy weather of the last week or so. Hopefully it blows in here in the next few days...I'm not acclimatized to -30 anymore!

Donovan spent today hooking up his computer, and finally moving into the room I re-decorated for him before Christmas, at some points despairing he would ever see it again! He's fillng a couple cabinets with his meds and supplies, figuring out a workable schedule for treatments and the fitness regime he must follow to keep the new lungs in tip-top shape. He already put a few miles on the treadmill, so he's off to a good start. He also surprised Stephen, who was in bed when he got home last night, and up and out the door before Donovan was up this morning, with a trip home from school. Now doesn't that warm the heart?

Not one to waste time, I worked a half day at preschool today, and as usual my cup was filled to the brim with joy courtesy of 20 charming 4 and 5-year old and their wonderful parents, to say nothing of my awesome co-workers. May you all enjoy your jobs as I do mine!

We are home! It feels so good to write those words, and to snuggle into my familiar bed, next to my familiar husband...knowing all is right with our world.

May God Bless all of your homes with harmony, and your hearts with peace!

Love,
Beth

Homeward Bound (don't jinx it, says Donovan)

2009-01-28T12:27:00.004-06:00

HEAR YE HEAR YE!, Loyal Readers and Friends, (picture the town crier with a parchment scroll in hand, calling out in a loud voice to all the townspeople)....

Some very exciting news....Yes, it looks like the next few days will be spent packing up! We were absolutely shocked and delighted at the last clinic visit when Dr. Lien asked so casually...."Well, would you like to go home for a few days?" What!!! Like to ? Love to!!! We were under the impression that this would be home until at least March, but a clearer x-ray does wonders for the doctors' death-like grip on patients, it would seem!

So, going home is a little more complicated than merely gathering boxes and packing up suitcases...we have to ensure we have all meds well stocked, emergency numbers documented, all the t's crossed and I's dotted. Feels a little like that new parent syndrome spoken of when we first sprung Donovan from hospital post-transplant.

The plan is for Laurier to come down on Friday with friends in van to carry back some of the larger items....the dog & kennel, Donovan's 24" Imac, and of course my suitcase...Donovan & hopefully a good friend will drive his Shadow back and I'll go with Laurier & our friends on Sunday.

I anticipate working at preschool the following week and then coming back with Donovan on the 9th for a CT scan and some other tests the next day, and hopefully home again on the 11th. Life will be spent making frequent trips for checkups in Edmonton for the first year post-transplant, hopefully weaning down to 3 or 4 times a year as time goes on and problems prove few and far between. We have to get used to the uncertainty of not knowing if a checkup will mean a few days or weeks in hospital pending results of blood-work, scans, pulmonary function tests etc which are reviewed at each check-up. We will only be told at our clinic visit when they will want to see us next, could be weeks, could be days.

We are so thankful for the support from friends, family, all the prayers, generosity, good wishes and just the knowledge that we have not travelled this road alone. It has been a long four and a half months, full of mountain peaks and valleys.... but God has provided all that we need and more. We look forward to a joyous home-coming and lots of making up for lost time.

Can't wait to see you next week in PA!

Love,

Beth

A Note from Donovan....,

Hey all, So this is it! The time has finally arrived. Isn't weird how at a time like this you look back and think "well that wasn't that long ago?" But at the time of waiting each day seems like forever. So the next few packing/waiting days are going to seem like forever and a day, plus the drive! AHHH. It's gonna be the longest drive of my life! Hopefully life at HOME HOME won't be too daunting with all the new meds and routine that has to be done exactly the same time everyday (no more late late nights or late late sleep ins!).
Looking back it seems like when I dreamed of having my transplant , it wouldn't have been nearly this soon or dramatic, I always thought mid late twenties, you know because of the ever looming "average lifespan of 36 1/2" for an average CFer and my CF was much more aggressive than most. But none of us (we CFers) are average as I found out, everyone here had a different story and experience to tell. but nevertheless "it" timed itself very well. I also didn't know how much work it would be after! I always had this picture of going under for surgery waking up a little rehab and off you go, brand new! But as we got to know the "routine" it seems that I am just as busy if not even more with daily 'treatments". But breathing easier makes it worth it, Because now every day is a new opportunity for something great.

Thank you all for your faithful prayer and support

"who has two new lungs and a smile?"

This guy : )

Donovan

Eighty-eight per cent!!!

2009-01-26T14:09:00.002-06:00

That was Donovan's pulmonary function results today, his highest yet, and very blog-worthy! Perhaps his lungs are celebrating, along with the rest of us, that he is now out of hospital, after a whopping 42 days as an in-patient to treat his fungal infection. We got the walking papers on Friday afternoon. What a huge relief! We still need to go in to the hospital each weekday morning for bloodwork, x-rays, doc visits, physio etc.. so this means early mornings, but it's still waaaaay better than being an inpatient.

We won't know if the fungus is irradicated until the next CT in a week, but we are hopeful. Donovan continues to do anti-fungal treatment by inhalation and oral meds and the effects of the IV treatment are slowly dissipating. So, we hung out here this weekend, walked the dog, watched a movie, and for the first time since before transplant, Donovan was able to attend church on Sunday morning. What a huge blessing! We also visited Al's aquarium supply store to scout out fish for the tank here....much better shopping than what we have at home. It was great to have such an ordinary weekend....don't think I thought about hospital once!

Turns out the treatment of a lung fungus is rather costly. We learned upon picking up drugs at pharmacy that the province of Sask (cheapskates that they are), is choking on the $1000/5-day cost of only one of Donovan's drugs. The inhaled ampho is also waaaay up there cost-wise. It's a good thing Donovan is worth every cent (most days, ha ha) ..... add all this to the cost of his regular CF drugs, the cost of surgery and hospitalization, and I'm sure he is worth millions! It may be a hassle to have some of these drugs covered by our province when he is finally discharged there, so we need prayer for this

Well, with 6-ish wake up this morning, I'm in need of a nap....take care all!

love,
Beth

Puppy Love!

2009-01-21T00:23:00.002-06:00

Hello all.

Well we have a new member to our little family here in Edmonton. No, Katie did not have her baby early, our new addition is Donovan's dog Scout, his beloved Springer Spaniel. Verla, the gal at whose place we have set up residence, has graciously agreed he can stay for the time being...seeing as we're here for a while. And he was welcomed with open arms as Laurier and Stephen brought him this past weekend....oh, and we were happy to see Laurier and Stephen as well, (with open arms! )

So, it was off to explore the dog parks in Edmonton, and with wonderful, warm temps we made it to two different places, and met all sorts of four-legged furballs....wow, folks here all have purebreds, it would seem. The place looked like some sort of dog show, from Chihuahuas to Great Danes, the dogs were out in full force, and our sociable Scout was in doggy heaven.

We also had a great visit from Laurier's niece Julie and her boyfriend Jason this weekend, and it was great to see them. Sunday we celebrated Katie's birthday (which was on Monday) and then said goodbye to Laurier and Stephen on Monday as they headed back to work and school in PA.. So, a busy few days, but a great change of pace.

Now for the health report. I've discovered that "In the next few days" is a favorite quote of the docs. It is used to cover a variety of situations like "when can I go home" to "when am I getting off IV" to "when is the next scan" etc. it doesn't really mean anything in terms of actual measurable time, but it gives them something to say, and alas, it gives us false hope...but now we've got the code cracked, so we don't hold our breath. Hmmmm.

Actually there has been some progress made...Donovan's "ampho-terrible" IV drug, spoken of earlier was discontinued on Sat., and he now has inhalations with the same med. The thinking is that he will be able to be an outpatient with this med, but they have to find a way to fund it, being an out-of-province patient....which is tricky, apparently. So he's still in the hospital, coming out most days for the later afternoon and evening. He feels fine, is no longer napping during the day as he was around xmas time, still needs to eat more, but is not dropping pounds as he was earlier.

And here's some great news! Donovan is now running on the treadmill...yes, running! Building up endurance, a little more each day....so Thank You God! It is more than I ever hoped for to see him run again! It has been years since he had the lung power to run.

Today was a special treat as I got to see my grandbaby on ultrasound. All the bones of the spine, ribs, cute little toes...s/he is adorable, that's for sure. Just wait till I get to see him/her in the flesh!!! And more good news, the little one is no longer breech! Yay! About 3 more weeks till baby day....I hope to be around, but have Donovan all better....let's continue to pray to that end.

Well, "Nana" needs her sleep, so goodnight and God Bless!

love,
Beth

2009-01-12T18:07:00.001-06:00

We're really "pumped" today about Donovan's latest CT scan, which shows shrinking fungal nodules. Some have disappeared completely, and others are on there way to being gone! Donovan has now had over 5 weeks of treatment, you can see how this is a long process, but we getting there and trusting God that his lungs will soon be clean & pristine once again.

The doctor showed us the actual CT pictures, and I was horrified to see the early photos, which showed round, white balls with what is known as a "crushed glass" halo around each nodule. Some were over a centimeter around. They were scattered deeply in both lungs. What a terrible threat to his precious new lungs! And since he had plenty of lung tissue, they gave him no trouble at all as far symptoms and lung function. He could breathe just fine. To think we could have gone home and not known what he was growing is truly frightening! Today's scan is much better. Some of the nodules, the smaller ones are gone completely, and others have shrunk to half the size. The doctors are impressed...and so are we!

Yesterday Donovan's renal function was "down" again, so he had to tank up with a litre of IV fluid, and needed just half of that today. We must pray his kidneys will withstand at least another few weeks of the toxic fungal treatment so we can rid his lungs of the stuff for good.

Had another great visit with cousin Dave yesterday and his dog Dutch....pet therapy is good for the soul! And lunch with old friends Wayne & Pauline today. Great to see you, and what a great lunch...real food from Earl's, yum, yum! Nice to see Donovan dig into a plate with interest! Visits are always a bonus when one day just runs into the next, marked only by IV bag changes and the roster of nurses...so thanks a lot for coming to see us when you can.

Well today the white stuff is piling up on the sidewalk, and having lost a game of crib to Verla, it's my turn to shovel! (Don't laugh Laurie E. I'll be thinking of you with each shovel-full, and I'll still love winter!).

take care everyone!

Love,
Beth

"Ampho-Terrible"

2009-01-07T15:46:00.002-06:00

That is the nick-name of the drug of choice used to treat Scopulariopsis, the name of Donovan's fungus. it's nasty stuff, and has barrage of side-effects, much like chemotherapy. The idea is to give it as long as the patient can take it.

The last week it's been difficult to watch as the life gets sucked out of Donovan, much like a balloon deflating. He looks a little now like he did pre-transplant. The color is gone from his face, he moves in slow motion, has little appetite,and wants to sleep a good portion of the day. So frustrating....he's losing weight.

There was a ray of sunshine today as Dr. Lein told us his last x-ray looked normal! A consult with infectious diseases suggested cutting back on the ampho so that he could take it longer. So,as of tomorrow we are down to 200ml from 300, and hopefully the dark & gloomies will back away....(depression, not people)....

We're really hoping the next CT will show more clearing of fungus, and the next bronch will be even more improved. Donovan can get passes, even overnight passes, but it's too hard to go out when you have zero energy.

However, we soldier on, and today Donovan got to the gym for a treadmill workout,something that's been too difficult this last while. I'm hoping to snag him home to make some Taco Soup with me later today....should chase away the winter chills! He also needs to fix the computer for me, which says I'm disconnected from the internet.

Soooo, we keep praying, and God keeps meeting our needs. Blessing each one of you who are lifting us up to the Throne....

love,
Beth

New Year, New life....

2009-01-03T23:47:00.003-06:00

Happy 2009 everyone! May this be a wonderful new year, full of health and harmony! How are the resolutions holding up? Haven't had much time for resolutions here in Edmonton. After much prayer and waffling on our part, Laurier and I have come to the decision that he will go home, and I will stay for now with Donovan.

We are all adjusting to the reality of this setback, and gradually accepting that hospital and treatment in the reality for now, but all for a great cause...Donovan's eventual freedom from all things medical, and the start of his new life. The discouragement of not going home is gradually abating, and we are filling time with as many fun things as possible, afternoon passes from hospital, learning to play Canasta (card game) and finishing off the Christmas goodies, hanging out with Stephen who is with us until he goes home with Laurier tomorrow. Also had a great visit from Laurier's cousin Dave, who bought his Golden Doodle (half standard poodle, half golden retriever) "Dutch" to visit with us at hospital today. What a great puppy, so friendly and a real head-turner. Hopefully that helped with Donovan with his loneliness for Scout back home.

A little better news from the docs today. They are thinking seriously about dropping one of the IV drugs and moving Donovan to outaptient IV. Finally!!! But we have learned not to hold our breath with these proposed changes, so we'll be Doubting Thomases till we see it happen. I had to push today to and put the words in the doc's mouth that we are indeed winning this battle. I find these medical types to be very guarded with any type of encouragement, and all to willing to say how worried they are, and how serious everything is. So scary, and not good for my anxiety!! They've also mentioned "three more months" several times, and jokingly the other day "we'll have you out of here before xmas!" ha ha ha....not so funny.

So friends & family....c'mon down and visit us....Edmonton, the land of cheap gas and sub-arctic temperatures. I'm going to need lots of distractions and visitors, hanging out here, far, far away from my hubby, family, friends & darling little preschoolers....I miss you all already!

We have depended on God thus far, and he has not let us down. I still stand back and marvel at Donovan walking the stairs sitting and sharing a meal with us, laughing as he plays video games with his brother. We are so, so blessed to have him with us at all, and we will surely get through whatever is ahead this year.

Thank God there is no limit to what we can ask for....and tonite I need prayer for the adjustment to living here, away from my usual routine, to be able to encourage Donovan as he goes through all of this (he hates to see any form of worry), as he and Laurier had a very workable guy's thing going here....for the adjustment for him as well....for laurier & stephen as they head back to school and work, for safe travel....and of course, for outpatient status for Donovan early next week, and for complete healing for his lungs.

On another note...Katie's due date (Feb. 14) is just around the corner. One bonus of being here instead of Sask. is that I get to see her about once a week. Could we all pray for health & strength for her and for my precious grandbaby? Not sure if I mentioned that we're waiting for the little one to be in the appropriate position for birth. S/he is currently head-up....as well, Katie is on her feet much of the day with her two jobs, and we all remember the discomforts of the last weeks of pregnancy....

Blessings to all this cold, cold Edmonton evening,

Beth

Only "The Shadow" knows...

2008-12-28T02:01:00.002-06:00

...That would be an early '90's teal-colored Dodge Shadow, with a wicked loud stereo and not so much under the hood, owned by one Donovan Gobeil, who is really missing his "ride" so dad is heading home to Sask. tomorrow to pick it up for him. Actually, the stereo in the aforementioned car is in need of a little tuning up, so that will keep Donovan busy in the days to come....

But let's back up a bit and say we had a great Christmas here in Ed-town. Christmas Eve Donovan came home from hospital for supper, then we sat around and ate, played "Settlers of the Catan" the kids favorite game, opened a few gifts and hung out until it was time for Donovan to head back to hospital. The next morning, Katie & Kurtis met us at hospital and we had our traditional Chritmas brunch (complete with Maple Twist Rolls, sorry we couldn't share with y'all) in the 4th floor atrium, and played games again until it was time to take Donovan with us once again. We ate a huge turkey feast and opened gifts, took pictures, played Monopoly and ate some more until it was time to take Donovan back. Did I mention I'm avoiding that bathroom scale....but all the eating seems to be doing wonders for Donovan....I think he may finally have passed me weight-wise, a dream of both of ours....

So, hospital it is for now, but we're really hoping to stop some of these toxic IVs soon. One of them is really damaging Donovan's hearing, starting with ringing in the ears and ending with some deafness. We've gone down this route in previous years, so he has already sustained some hearing loss and cannot really afford anymore. They've taken him off an oral med hoping for improvement, but none so far. On a good note, an x-ray has shown some clearing of the fungal infection, and one doc is suggesting that if Monday's CT scan is also improved, then he may be heading out of hospital soon. Renal function is improving as well, so that is also good news.

So, some prayer is needed for our Donovan's situation, but Christmas is the season for miracles, so let's ask away....and topping my list would be an improved CT scan....off IVs, out of hospital and tinkering with that Dodge Shadow early next week, with his hearing intact! (not to be damaged by the "wickedness" of the car stereo!)

Laurier, Donovan & I also would like to figure out where we will be living in the days to come, who will be here & who goes back home to work and be with Stephen....so we could use some wisdom for these decisions. Please pray for the choices we will make.

I would also ask that we all pray for Kristen....she needs those new lungs soon...and is also on IV treatment at the moment.

Hope everyone's Christmas was merry, and Happy New year to all!

Love, Beth

Christmas Hospital - Style

2008-12-23T23:06:00.002-06:00

Well, it's not ideal....but it'll do for now. A little chat with Dr. Weinkauf took all the wind out of our sails yesterday. Even though the bronch results were good, even though they've found sensitivities to the fungus and we are on lots of the right drugs....it's not enough to move Donovan to outpatient status. They aren't going to discontinue any of the IVs just yet, they even added another one yesterday. Dr. W. likened it to fighting cancer....you use all the toxic stuff you can until there are just too many bad side effects, then you cut back. Not what we wanted to hear. He also emphasized what a rare infections this is, how rare it was for it not to be "covered" by the drugs Donovan was already on, and how baffled they are by the whole thing.

Good news today, an X-ray showed some clearing of the lungs. An Infectious Diseases Doc said that if Monday's CT scan is clear, than perhaps on Tuesday we'll start as outpatients. They are not even talking about discharge to PA, as Dr. W. says he cannot think of a doctor wanting to "take on" Donovan's care. He want to be able to "lay eyes" on him personally, every day!

So yesterday was a real downer, but that is when we start looking up to God, who is bigger than all of this. He's gotten us through so many, many tough times, and He's not afraid of taking on Donovan's care. Yesterday Donovan got sick with a migraine and vomiting from one of the drugs. He's having ringing in his ears from another one. So, they are discontinuing one drug at least for a while. He's feeling better today and got out on a pass from 5-10pm tonite. We came back to the suite and watched "A Christmas Story" a family xmas tradition, and played a card game. It was fun! The boys wrapped a few gifts and did a little snooping under the tree....we can't wait for everyone to get here.....We think Donovan will be able to leave the hospital both Christmas Eve and Day for a few hours to have supper with us. We'll take Christmas to the hospital the rest of the day....

So....the prayer list: For the fungus, bacteria to recede....leave for good!
No more bad drug side affects!
A good, clean CT scan on Monday, no trouble in sight!
For encouragement for Donovan's heart...for him to keep looking up!
For safe travel for Katie & Kurtis and Amy & Tyler in this cold, cold weather!
For the docs to find a way to do outpatient drugs in PA if possible!

And lets not forget the praise list! A good x-ray, yay!
Talk of outpatient status next week!
Lots of special specialists on the case..they all have Donovan's best interest at heart....

I would also like to add that we are thinking of our precious donor family this time of year. It must be so hard, it could just as easily have been us having our first Christmas without Donovan had they not had the courage to donate their loved ones organs. My heart and prayers go out to them. May they be comforted at this family time.

Well, the countdown is on....today i baked one of our holiday traditional foods...maple twist rolls, and already made cherry balls, nuts n' bolts, and poppycock. The turkey is thawing, and tomorrow I'll make our traditional Christmas brunch casserole...and keep a watch out for Amy & Tyler.

We have so much to be thankful for in the midst of all the craziness. Praying that you too will be mindful of all God has done for you and yours. Have a wonderful Christmas Eve!

Love, Beth

One hundred and twenty eight steps

2008-12-19T22:25:00.003-06:00

That's exactly how many there are, spread over 16 half-flights from the main floor of the hospital here, to the floor where Donovan's room is...and he scurried up all of them (by passing the elevator) just like a young mountain goat. He kept up with soccer-superstar younger brother. He passed his parents, and kept one flight ahead of them. He did this all the other night, just days after his 3-month double lung transplant anniversary! Thank-you our miracle-giving God! That is more than I need for Christmas.

Yes, Donovan is for now an inpatient, but it isn't slowing him down! Stephen and I arrived here in Edmonton (Thank-you for the ride, Diane!) safe and sound on Wed. nite. It had been over a month since I had seen my boys, so it was a happy reunion. They both look so good.

Donovan's day is pretty much taken up with treatments, so he is missing the gym and physio. The drugs are toxic, and his kidneys are taking a bit of a hit. This fungus is slow-growing and it took 2 weeks to get sensitivities on it, which happened today. The Infectious Diseases specialists are quite baffled, as this particular bug is found all over including in healthy lungs, but is rarely a problem, it's very unusual for it to become an infection. Trust my boy to be one for the books! The great thing is, all the drugs Donovan has been on since the discovery of the fungus are the correct ones. The fungus was killed in the petrie dish by all of them. Yay!!! He will need to continue on at least one of them for life...so more drugs to add to his travelling pharmacy.

So, another bronch today, which we'll get results of on Monday, and if everything is good, he can come home (here) and continue outpatient IV. Then, after a biopsy and CT scan, we can possibly go home to PA early in the New Year. We are here for Christmas, but that is just fine...our very pregnant Katie doesn't need to drive all the way to PA, and we are all together. That's what matters most. Amy will join us on Christmas Eve. It will definitely be a memorable Christmas.

Ok, we need some prayers. It's been difficult to face this setback, but God is gracious to us. Let's ask for ....

Good bronch results.
Good CT results
A workable IV schedule, and that we can take it home (as we are used to doing) instead of having to run to the hospital to be hooked up every few hours, and have to wander the halls there...home would be less "germy" and more fun!
Home to Edmonton on Monday, home to PA soon!!!
Divine protection for those two lungs...no more bugs in the breathers!
Healing and correct function of those kidneys...no lasting damage

Let's praise God for....

Having Donovan feel so well despite the infection.
Finding us some sensitivities....and finding we were on the right "juice" all along....
Sixteen flights of stairs...woo-hooo!!!
Great doctors and other care givers all over the hospital, working hard to find answers and keep Donovan healthy. God bless them all!

It is wonderful seeing a few of our physio/gym fellow transplantees heading home for Christmas. We rejoice with them! Still also waiting to hear that our friend Kristen is in for a new set...let's keep asking God for lungs for her, Ok?

And we wish all of you, our wonderful supporters, friends and family, our fellow journey-ers a Christmas filled with joy, peace and love...and the realization that the best Christmas gift ever came to us over 2000 years ago, and remains unchanged, in an ever-changing world! May the knowledge of the love of God guard your hearts and minds this Christmas, and remain always with you.

Love and God bless you all,

Beth

Just letting you know whats happening. A post by Donovan

2008-12-15T19:13:00.003-06:00

ahh, well, okay. Just a little set back.

So you have all heard from my mom that we have had our first little setback. And like all good doctors should, they did prepare us all along to expect these things every now and then. So no big surprise to us, although a little dissapointing because we were all looking forward to being home, but at the same time we have already been here this long, so a little longer doesn't seem so bad and especially since we have had all this support along the way.

So they have Identified this this fungus, (it's called scopulariopsis) as you already know, but they are still having a lot of trouble getting its Sensitivities, so they just decided instead of waiting they are going to "throw the book at me". which is a little overwelhming at times. They have me on (and excuse my spelling) Amphoteracin a 2 1/2 hour antibiotic (that looks just like Orange Juice) which you have to have a Saline bolus beforehand, 1000Mls over an hour to protect my kidneys, and then the Ampho and then a D5w solution to flush because the ampho is not compatible with saline, then they have me on Caspofungin for the fungus as well, and that's a half hour, then they have me on 3 oral antibioics (one liquid that tastes like minty chalk, and two other pills) two for the fungus and one (cipro) for my newly cultured pseudomonus, and then another IV antibioic Cephtazadine for the psuedo as well. So my morning to late afternoon is filled with all of these, but then I have most of the day off to go wander and do exercises (which I havn't been able to get to yet)

Today I had another bronchoscopy. It went very smoothly. while I was getting an IV started the very nice lady doing the Bronch said I was very alert, calm and curious about the Bronch last time and they allowed me to sit up slightly and watch the screen. I had no idea all that had happened! So she asked if I wanted to "see the pictures again" I said sure why not! Now I kind of find this ridiculous because I won't remember and I don't remember actually,(because of the amnesic inducing drugs they use) but I kind of figure it would be calming to be involved in the procedure rather than just trying to hold still for a half hour.

So it looks more and more like I will be here for Christmas, which I am a little dissapointed about but, meh, seeing people here that I know have been here before I even showed up kind of humbles you and makes you look on the brighter side of things.
For example I still feel fairly good, I don't have a cough, fever or any pain. which was just explained to me today, it's because the Immuno-surpressants kind of hide those symtoms. I have my dad here as well and he's a great supporter! Thanks dad! I also for the moment have a private bedroom and free TV! keep that on the DL though because the TV generals will come at a moment's notice and take it away!

Anyways, well I just thought I would give you all my spin on things.

Hope your pre-Christmas plans are going swell!

love,
Donovan

A Bump in the Road...

2008-12-09T23:48:00.005-06:00

Well, scratch the plans from that last blog. We've hit the first hurdle in our transplant journey. We are told to expect these things, that everyone will experience setbacks post-transplant, but somehow that is cold comfort (from where I sit, anyway, waiting at home for my boys)...well, here's what happened.

All you "facebookers" probably saw that Donovan posted a few days ago he was growing a fungus. I don't have the name of this particular bug, but it showed its ugly little self up on both the CT scan of last week, and in the samples taken from his bronchoscopy...yes, the same scope I raved about on the last post, the one that said everything was 90% healed. At any rate, this fungus is everywhere in the environment, and may even be in your lungs right now (isn't that a pretty though? does it make you want to scratch or something?) without presenting a problem. If you happen to be immunosuppressed as Donovan is so as not to reject his new lungs, then this fungus will grow and cause all kinds of problems. So, they are in the process of irradicating this thing, but they must know what drugs it is sensitive to before Donovan is free to come home. Since it's a slow-growing bug, this will take until next week. Darn!!! But I shouldn't really complain. Donovan and Laurier now have to be at the hospital for IV drugs early every morning (weekends as well) in addition to their regular schedule of physio, bloodwork, scans, doc apppt's etc...and then back there in the evening for the second round of IVs. I don't envy this exhausting schedule.

The good news...well, there is always something good to report if you look hard enough. To start, Donovan reports that he feels great! That hairy little bug (when you hear fungus, don't you think of something fuzzy and green??) is not causing him any pain, and not interfering with his breathing! His lung function is still over 80%, and he's gaining weight as well, up a pound or so every week, and waaaay over his "sick" weight. Blood sugars are under control, vitals are all awesome. The two IV drugs are not making him feel sick, as did so many pre-transplant meds. So we are thankful for these blessings.

We could use prayer from all our praying friends...

-that this bug would pack up and leave, never to return.
- That the lab would find out its exact sensitivities to ensure we are on the right track with treatment,
- that Donny & Laurier be able to come home, safely & soon & that we would be able to continue treatment from this end, home for Christmas!!!
- For the "pet scan" on Thursday, for good results from this test. (this is at the hospital, not at the vet's, apparently he has to be in isolation following this as he'll be radioactive for a while! Yikes!!! )
-for clean, pristine, fungus-free lungs for Donovan!

Things get a little complicated when one is on anti-rejection meds, and one thing always affects another, hence the need for close monitoring while in treatment. Donovan is on four drugs for this bug, two orally and two by IV. They are quite toxic, and the trick, as with the ant-irejection drugs, is to ensure you are getting quite enough without being poisoned by it. So, lots of blood draws are in order, and thankfully Donovan has a "port" for this purpose, so doesn't need to have a vein fished for each time.

Well, this is certainly a test of faith. Can we keep our eyes above, keep being thankful even though we've hit a snag? I think so. I have to admit I'm disappointed, a little sad & lonely, but I do want the absolute best care for my boy, and for now this means a little more time in Edmonton. If we have to, we can all congregate their for Christmas, but of course we all want that boy home! And does he ever want that as well! I have to add that the world's absolute best boss took me out for some retail therapy today, and that helped a lot! Laurie, you are a gem!!! Thank you!!!

Still having challenges with my poor mom. She's been in hospital here since Oct 22, and still healing, very slowly. Her congestive heart failure is better, but she is still weak & frail. They are talking about a trial of time back at her care home, just to see if everyone can cope with her new level of care. It may be that she now needs a long-term care facility rather than a personal care home. We are also searching for answers for her chronic laryngitis, and hope to have that addressed soon.

It's a very busy life here, between work, mom, Stephen's sports and keeping up with Laurier & Donovan. Here's hoping that 2009 will prove to be a quieter year, I'd go so far as to want it to be boring in every way, just for a change...which it won't, I'm sure, as we wait not-so-patiently for the birth of Katie & Kurtis's little one in Feb. But that will be a welcome change of pace!!!

Well, with visions of fungus, no, make that sugar plums, dancing in our heads....it's off for a long winter's nap...here's hoping all your Christmas plans are coming along nicely, and that your journeys are all bump-free!

love,

Beth

Christmas comes early....we hope....

2008-12-02T23:19:00.004-06:00

Hello all,

I realize it's been a while since I've blogged, so it's about time! Although I just love hearing from Donovan on here. And love those photos too! Doesn't he look great? I realize it's his mom saying this, but really! He looks so...what's the word...healthy!!! Gotta love it!

Yes, I am happy tonite. Got some great news from my Edmonton boys today. Donovan had his scheduled bronchoscopy today, and I have to admit I was worried about it. (I know you find it hard to believe I actually worry about things...) anyway, this is where they put a scope into the airways and check out their handiwork, kinda like a plumber, seeing if the pipes are clear, and what the "connections" look like several weeks after transplant. well, looks like that surgeon did a good job, because the report is that Donovan is 90% healed!!! Thank you God!!! There was no thickened scarring that could hinder breathing, no flattening of the airways or anything else that could signal trouble later on, and if that wasn't enough good news, there's more... after a couple more scans on Thursday, ct of lungs and sinus scan...(yes, unfortunately Donovan still has CF in those troublesome sinuses and there is no transplant as of yet for that)...anyway...if he gets the green light...it's HOME TIME!!!

The plan is for Laurier and Donny to go to their regular Friday gym/physio and Doctor appointments, and then pack up in the afternoon and leave on Saturday. We will be on the front porch, scanning the horizon...can't wait.

This really takes me back to the start of our transplant journey. Here's a little synopsis....

August 31, it was a Sunday. None of us, least of all Donovan, thought on that day, that we would drive out of town and not return for months.

Donovan was supposed to be baptized at the lake that day, but instead we loaded Donovan into the car and left for the hospital in s'toon, because his IV antibiotics did not seem to be clearing an infection. I'll never forget that day. It was the first time I had seen Donovan in such respiratory distress, I felt so helpless as he struggled for breath in the back seat, opening a window to lessen what must have been a terrifying feeling of suffocation. Laurier drove like a demon, and to distract Donovan a little I read aloud from Sue Grafton's "T is for Tresspass". I have no idea of what the book is about, or what I read, but it gave us all something to focus on between PA and S'toon. We read, prayed and made it to University hospital, where they gave Donovan lots of oxygen, IV meds and steroids in the emergency room while I paced the halls and phoned friends and family requesting prayer for Donovan. By that evening he was breathing easier, and so was I.

Laurier and I stayed that night at Donovan's rental house, and the next morning he was still in a bed in the emergency room. Later Monday he was moved upstairs, to the observation unit. Donovan was fairly stable all day Monday, and we left the hospital that night wondering if we just might make it to Edmonton the next day, where Donovan had an appointment which was made weeks before, to be assessed for transplant...at some point...perhaps to be listed within the next year.

Early Sept 2 the hospital phoned Laurier and I. Donovan was coughing up blood. We always dreaded these episodes, but never had it been this bad. Donovan lost about a litre of blood, and even though the bleeding stopped on its own, an emergency bronchoscopy was performed in the ICU. For the first time Donovan was put on a respirator. We were devastated. Much pacing, much praying. What would happen next? What about Edmonton? I would look at my son's pale face, a tube taped to his mouth. His respirations so rapid. The sympathetic nurse's quiet reassurances. It was a nightmare. My stomach felt sick constantly.

Sept 3, things looked better. Donovan was extubated in the afternoon. We held his hands. He spoke of the lung bleed, wondered what the findings of the scope were. Said he had nightmares of it. Breathing at this point, so difficult for him. By the late afternoon a new system of oxygen delivery with a bigger hose is needed, as he cannot slow his breathing and is using so much energy to try to get air into his lungs.

Sept 4...Donovan was unable to fall asleep all night, and is in so much respiratory distress. He still wants to be baptized, says God is speaking to him about it. Our friends and pastor arrive, and he is baptized in his ICU bed, struggling for each breath...as am I. I cannot bear to see him like this, yet want so badly to hold him and take his pain away. Each hour seems endless. Laurier sees a vivid tripple rainbow in the sky after a light rain. He feels God is promising us Donovan will be all right. Me of little faith!

Sept 5...We are once again called to the hospital during the night. Donovan is once again put on the respirator. He developed a fever and his failing lungs could not oxygenate his body well enough on their own. I cannot stop crying. Yet, I am comforted in the fact that he will be sedated, and have some kind of sleep. He is exhausted from distress. So am I!

Sept 6 &7....the weekend goes by in a blur of prayer, tears, hall-walking, trying to force food into my body...trying to sleep...cannot concentrate on anything but my sick, sick boy, breathing via a machine. He is fevered, restless, trying at brief points of semi-consciousness to tell us things. His siblings come and go, we try to draw strength from each other.

Sept 8...We meet with the transplant coordinator for the hospital, the liason to Edmonton's transplant unit. Donovan needs lungs badly, the doctor tells us...yeah, tell us something we don't already know!!! In a whirlwind, a decision is made to airlift Donovan to Edmonton. We drive there and he flies. His departure is delayed, and he only beats us by 45 mins. We meet the ICU team, and are once again told our boy is critical and needs lungs. They will do all they can to get him off the respirator and get listed!

Sept 9 & 10 .... Up and down..still on the respirator...still fevered and choking. Bronched to remove secretions which cannot be coughed up. Transplant docs say "it's time" for lungs to arrive as it's been a couple of weeks since they got donor lungs for transplant. Historically they do the surgery every 2 weeks or so. We pray....

Sept 10...Donovan is listed! It' official! I stare at the punks hanging out at the corner store, wondering what blood type they are...I know, I'm twisted, but maybe that's what this kind of stress does to a mom...

Sept 11-12...Donovan deteriorates to the point the respirator is not helping much to get oxygen into his blood and remove the waste gases. The only thing left is the heart-lung bypass machine. Life support. Time is running out. we cannot believe we are losing our beloved son.

Sept 13...Lungs arrive as if from the hand of God. Surgery begins in the morning at 8:30 and lasts 8 hours. We are ecstatic...and feel as if we are living in a dream!

Sept 20...out of ICU and 23 days post-transplant,...out of hospital....And now...perhaps home on Dec 5th!!!

I still have to pinch myself, try to make myself believe we lived all of this out and didn't just dream it. Did it really happen? Does Donovan have new lungs and a chance at living? I cannot believe God's goodness to us, his perfect, perfect timing.

Check out Prince Albert this weekend...our's will be the house with the Happy Homecoming Donovan fireworks! How many hugs and kisses before a sarcastic "mom, lay off will you?" My Christmas present is coming home, 2 working, breathing, pink squishy lungs all wrapped up in the bony ribs of my 20 yr. old boy!!! And what are you getting this year?

and to all a good night!

love,
Beth

Some Photos, by popular request

2008-12-01T17:11:00.011-06:00

Here are some pics of the hospital inside and out . . .

The outside of the back of the hospital

Sitting area with library to the right, and those are real live plants!

This is the Christmas tree that just went up, made of of steel, wire, and christmas lights... not actually a tree, more bionic than anything...looks cool though

This is a shot of the "mall area" includes a few shops, pharmacy and food court cafe area.

and this is the fish tank in the family room, these cichlids breed like crazy! (couldn't actually take a photo of the room because there were quite a few people in there. but beside the tank to the left is a 2 couches and some chairs, behind me would have been 4 computers and more seating, very quite peaceful room...)

Physio in the Gym ...

The Vertical bench

Hamstring curls ...

Leg pully (kinda hard to see but there is a thing around my ankle attached to a pulley/weight system, and the walker is so I don't tip over)

Below Are some pics of the BTE Machine, it is supposed to simulate realworld actions, and improve your dextrarity. It measures your time, resistance and effort and it is all graphed on the computer.

The wheel simulation

The shoulder press (You go in a circle)

Wrist rotator ...

A Weekend with the Ladies - A post from Donovan

2008-11-25T19:26:00.005-06:00

Where to begin? What a full weekend! Brianne, Allison, Nicole, and Liz (school friends) made their way all the way over here to see me! I was thrilled to say the least! They came down on Friday, and we were able to catch up with each other that evening, sharing quite a few laughs. Oh and I might add that I noticed (I don't know if they noticed) I no longer go into those body racking coughing fits while laughing! OH YAH!

The next day the girls went on a very successful shopping trip (so i am told), joined up with me later in the evening. During the afternoon my sister Katie came over (on a rare day off) and we did some errands, Katie was looking for thread for her needle point project, my dad needed to go to Home-Depot and Canadian tire. So the evening rolls around and the girls make it back...and we decide to order some pizza... online. I have to admit, I don't know about you but this was the first time I have ever ordered pizza online, kind of a odd thing to do on the internet. Well we ate pizzas, we watched an episode of Ugly Betty online, then afterward we tried to help a certain someone find a certain item online, for a certain someone else.

After a while this certain someone found the certain item but didn't have the means to get the item...I hope this mysterious certain someone has it now! We also enjoyed a few pixar shorts including Scrat "No time for nuts", Jack Jack Attack and "For the Birds".

Later on, we took out some of my daily equipment and tried it out...they all tried the Blood pressure cuff (they're all in good health, turns out) and also the fancy bathroom scale, which requires you to wet your feet so that it can calculate your total water percentage as well as your total body fat. As it happened, they were slightly dehydrated...I think it must have been the shopping. I'm not sure if it was that night or friday but I showed them the pictures of my old and new lungs, which the surgeon had taken and emailed to my family...some were a little taken aback by them but also kind of intrigued...I'm not sure what to make of them, but like my mom said its kind of satisfying seeing the old lungs, seeing these things that caused all the problems over the years. We talked some more, which I really enjoyed/missed, I mean facebooking/emailing is great and all that but it isn't the same as a good visit in the flesh!

Sunday the ladies hit the road again, and I met my sister and her hubby and his parents for lunch at Tony Romas...MmmMmm good! I had myself a steak burger and fries, my first steak in a long while. Delicious! I think it helped contribute to my weight gain ... I think I am now around a healthy 61.6Kgs or 135.2lbs, which is my highest weight ever and well on my way to my doctor's goal of 145 lbs. After a great lunch we headed over to Futureshop to check out a TV package I'm eyeing up. We got ourselves some help right away, CRAZY right away for Futureshop! It must be because of the Christmas season... anyway this salesman was very talkative, knowledgeable and overall a very good salesman...but we didn't end up buying anything, we got ourselves a price quote and continued shopping elsewhere in the store. But here's the kicker, the salesman later finds us and offers us a flyer that says something like "we beat all competitors by 10%", thats not the kicker, its this, he smells like alcohol. Badly. Steve, you need help!!! No sale for you!

So that was my action packed weekend. I was able to spend some quality time with great friends, take in a great lunch and rest up in one weekend!

Thank you girls so much!

Love,

Donovan

Up. up and away...

2008-11-20T22:56:00.002-06:00

Donovan's pulmonary function is up again! His FEV1 (a measure of lung function) is now a whopping 81%!!! I give him an "A" for that! Just had to brag about those new lungs! And yes, I'll admit I was a little silly to worry about the "crackle" in his lung last weekend. After 20 years of dealing with CF lungs, I guess worry has become a habit I'll have to work on breaking.

So, with numbers like that, I'm going to let myself get excited about the possibility of him coming home earlier in December rather than later. Donovan has some tests scheduled for Dec. 4, and discharge from Edmonton is pending results of those. Let's all pray Dec 5 is the date! Thanks!

Yoga is now a part of Donovan's occupational therapy. Balance, muscle tone & strength...it all gets worked on with yoga, and gives him a break from the usual routine. I'll have to get him to show me some poses when he gets home!

Katie called today to report she heard hiccups from her baby. The doctor was getting the heartbeat with the doppler, and baby had hiccups at the time which could be heard along with the heartbeat! How exciting for her...wish I could have been there...Less than 3 months to go...

Mom is still struggling in hospital, mealtime, physio, it's all difficult for her and she is constantly exhausted. We're hoping her IV and catheter will be gone soon, and hopefully that will make things a little easier. Improvements are very slow in coming, and although her 'numbers' are good, she still seems very short of breath. We'd appreciate prayers for mom.

Well, off to bed with me! Blessings everyone!

Beth

weekend update. on monday ( a post by Donovan)

2008-11-17T22:03:00.005-06:00

So here we go. Saturday. I had my first "sleep in" in 3 months. Because of my new medication routine (as of the transplant) I have to eat with scheduled medication every 12 hours. So I tried getting up at 9:30 (this is my normal wake up time on weekends), then I ate, took my meds.. .and went back to bed till noon. Although my body being so used to getting up and staying up the past 3 months, it was an up and down kind of a thing. I'll have to get better at sleeping in.

So after the "sleep in" I awoke with a crackle in my right side, of my new lungs. This is not something new, but a reoccurrence of something that I have experienced before in the hospital. It is best described as something like inflating a new balloon in your hand, the feeling of the plastic crackling and separating as you inflate it. This of course had my mom worrying straight away, despite my best efforts to assure her that in the hospital the doctors and team were not worried when it occured. We decided to wait till monday and go to clinic to check things out then, in the meantime to use the "slurpee" machine to try and stretch those lungs out. Along with this crackly feeling I ended up being extra worn out after I woke up.

Despite these few setbacks we, (Mom, Dad, my friend Chantal, her sister Chenoa and I) went on with our plans to meet up with PA friends Kath and Ali at city hall for the "official" lighting of the super huge christmas tree and downtown decor. We arrived quite early so we checked out a little shop, took in some art and had a coffee. Once Kath, Ali and friends arrived we hurried outside , claimed a spot on the square and after a long awaited introduction for Santa, the crowd counted down and the Tree along with decorations were lit. But wait! There was more! What was this?! fireworks set to music?! Yes, there were a couple of songs set to fireworks for all to enjoy! What made it even better was sharing it with family and friends. Tired and hungry we said our goodbyes and were off back "home". Plans to join my brother in law for the evening to celebrate his birthday were cancelled. One activity a day seems to be the limit for now.

Sunday. Nothing much happened sunday, it was mostly a much needed day of rest. Stayed in the pjs till 3... walked over to London Drugs to get a print, and made a long walk over to superstore and back. Besides the physio I'm trying to get a little more activity in the afternoon or evening, it usually consists of a walk to the store or around the neighborhood. These walks are progressively becoming brisk walks.

Today! WOW WHAT A DAY! OHMIGOSH!!!!! Well actually it was a regular monday really. Up and at em' at 7, hospital at 8:30 for blood work, to the gym at 9-10:30, OT 10:30-10:45 (cut OT short today to go to un-scheduled clinic), to the pulmonary function and x-ray, labs from 10:45 -11:30 AND THEN to check out the crackle we went to clinic. Turns out the Doc was unconcerned, he says sometimes you just get weird sensations, his suggestion was that it could just be the lung rubbing against the wall or vice versa...See mom! nothing to be worried about!... although he did say that it was good we came by and got it checked and make sure nothing was going on , which was why we did the pulmonary and xray prior.

OH and YOULLNEVERGUESSEDWHATHAPPENED!!! We tried to thank everyone in a previous post but as people continue to give support, more thank yous are in order.

Special thanks to: Dad's cousin from Albertville, Marie Gobeil & familly, and Mom's cousin fro Ontario, Greg Demaine, for their very generous financial support.

We also just found out support was even given from friends of my aunt Jewel in Allan, SK. Pius + Bea Brossart. This is truly remarkable that even people that we have not yet met are supporting us. Thank-you for the lovely card, gift, thoughts and prayers.

Thank you also to Gloria White, a co-worker of my mom for her gift. You are incredibly generous. And Thank you also to our church family, Prince Albert Alliance, who continues to support us. We appreciate all of you so much! Thanks also to the Hagel Family for taking in Stephen so Mom could be here for the week, it is so special to have friends who generously help us out when we are in need.

Well that pretty well sums up one of my most exciting weekends in a while, thanks to christmas lights, fireworks, family, and friends.

Bringing home the Gold!

2008-11-14T23:48:00.002-06:00

A great day here in Edmonton! It was rise and shine & out the door to clinic...with nothing but good reports...Don't you just love Friday? The doc today was very pleased with Donovan's progress. His flows are up to the highest yet,(FEV1 of 76%) and he really encouraged Donovan to begin to "push it" with his cardio. Although we were told it would be unrealistic to expect 100% lung function, the theory goes that the harder you work, the more the lungs will give you...so we will definitely be pushing it. He confided that physio-rehab was for "old people"...(probably referring to this author's age)! Dr. Nader told us the story of twin girls with CF from his home in California who both had lung transplants in their 20's and went on to win Gold medals at the Transplant Games. Didn't know much about the Games, so will have to look into that. Donovan has told us he definitely wants to be able to run with Scout in the near future.

More good news...weight is also best yet, at 60.2 kilos. Prednisone is decreased to 15mg and will soon be at 10mg where it will remain for a year. The prednisone is giving Donovan the cutest little puffy cheeks, which I'm not allowed to pinch! It's also helping his appetite and we welcome that. They are talking about switching his diabetes management to "carb counting" or estimating what you will eat at a meal and dosing your insulin according to that instead of following a scale depending on your blood sugar results. This will decrease the amount of insulin needed, and we're still hoping Donovan's tired old pancreas will kick in and we'll be able to do away with all the pokes...wouldn't that be great?

Still haven't figured out the problem with our microspirometer...that device used for home PFT's. It isn't broken apparently, but it's not giving accurate readings. This leads us to believe it's a technique problem. So, please pray Donovan will be able to enhance his technique for this very important part of his new lung management...he needs to record his findings each day...any decline of 15% or more over three days could mean organ rejection. It's vital that he be able to do this test accurately each time once we head home! Thanks!

Out to a Japanese restaurant today for supper with my friends Verla & Bernie, and Donovan's friend Chantal and her sister. Also shopping for my grandbaby to be with Katie who is starting to feather the nest for next Valentine's day...newborn sleepers, tiny little socks, cute little hat, can't wait!

The weekend is zooming along, and once again I'm feeling quite torn...it will be so hard to leave here on Sunday, but I also miss Stephen at home, and Amy who is usually there on weekends. Hopefully Donovan will get the green light for an early rather than mid-December discharge.

Good news from our friends with the daughter who had heart surgery yesterday. Everything is going very well, the surgery is a success and she is already sitting up and eating! Praise God!

Mom is up and walking a few steps with assistance at home in PA hospital, but still not eating. Bribing and coaxing are proving to do little, and she still has some unexplained vomiting. Her voice is little more than a whisper, which can only be explained by her profound weakness...please continue to pray for mom. Her lungs remain clear, so we are very thankful the congestive heart failure seems under control.

Off to bed for another busy day tomorrow...good night all!

Beth

To be or not to be....

2008-11-12T22:05:00.003-06:00

That is the question my dear mother seemed to be debating the last couple of weeks. As mentioned in previous blog entries, mom is in hospital in Prince Albert following surgery to repair her broken hip, and struggling with heart complications. She was doing so poorly that the entire family was called in as we expected her to not recover. The last couple of weeks have been a roller-coaster and as you all know, I'm not a fan!!! Last week it was decided to institute palliative measures only, but within days of this decision, mom seemed to rally. Then, not so much, then the rally is on again, then off, and .... wait for it, on again. And so it goes....I was on and off again during all of this with my plan to come to Edmonton. I didn't feel I could leave with mom so sick, but desperately missed seeing Donovan, and being with Laurier as well.

So, Monday (Nov. 10) after mom was actually able to get up and walk with assistance of two physio people, I packed up and headed to Edmonton with Laurier, who had been home with me for the last 10 days while his sister came to stay with Donovan. I'm keeping in touch with home and my two sisters who are with mom. She continues to struggle, but I think some progress is being made. They were able to decrease the amount of oxygen she was requiring, and she's still at least talking about recovering, if not making steps in that direction. Yesterday she had a lot of nausea, so that was a setback.

So, here I am back with "my boys"! I hadn't seen Donovan in the flesh since the week of his hospital discharge, a whole month almost! And I have to say, he really looks taller, and his shoulders are wider! I'm not kidding! Whatever he's doing is sure working! He looks great, and is working so hard to stay in top condition and make those new lungs feel right at home. Yesterday was a rare day off from all things medical, but today we attended clinic and then hit the gym and occupational therapy.

There is a small concern with a tiny decrease in Donovan's "flows" so this will be looked into on Friday. We're also experiencing trouble with the home lung function test....that little gizmo that is very expensive and must be relied on to tell us where things are at with the new lungs. We'll take that in for a tune-up tomorrow! The good news is that we're starting to talk about getting out of here...not that Edmonton hasn't been great, but home would be even better! Donovan is scheduled for a CT scan & bronchoscopy on Dec 4, and may be able to go home the week following....how awesome would that be???

We saw our friend Lauren and her new lungs hard at work in the gym today...thanks so much for prayers on her behalf! Her cheeks were rosy and she was looking strong. I could so relate to her ecstatic mom! Don't you just love miracles! Thank-you God and all who prayed for this young lady!

So, a few prayer items....we need to figure out the mysteries of that home PFT device, and getting working reliably every time. We need to ask God to continue to breathe the breath of life into Donny's new lungs. No decreases on any tests...which could hail rejection....the dreaded "R" word.

Also, our friend Kristen...in desperate need of some slightly used "breathers".... we caught up to her as well today, and all I want for Christmas is new lungs for Kristen, please and thank-you!!!

Please continue to remember my mom in your prayers, that she would grow stronger with each day. She's really tiring of being so limited in her mobility, and it would be great to see her up and around again. Please pray she has no more episodes with fluid build up around her lungs.

One more item....we have a friend from Prince Albert with a rare but serious heart defect about to be repaired tomorrow, Thursday, Nov 13, right here at the good old U of A hospital. Please pray for Candace and her parents. She's a young woman in her teens....a very courageous girl! Thank you....

So good to know we are in the hands of Him, who is able to do more than we could ever ask or imagine....so good to know you are right here with us...praying you will experience HIs peace in your life!

love,

Beth, back in Edmonton

My answer to prayer.

2008-11-06T16:28:00.004-06:00

Hello all! It's been a while since I posted here so I thought I would give you a little update.
So first things first. My health continues to be stable, so real big changes. My lung functions are holding steady about 75% I would like them to continue to climb but I'm not complaining. My insulin has been reduced again, so this is good news, hopefully as the prednisone is reduced it will allow my sugars to settle back down. I continue to get stronger with exercises I'm up to 30min on the treadmill at a 2% incline and 2mph, and big difference from the 5min I was doing at the beginning. I am also increasing the intensity of the O.T exercises as well for example I'm up to 6lbs biceps curls for 90secs, thats up from 1lb I was doing in the hospital bed for only 10 reps! With all these increases I'm up to 2hrs in the gym/O.T (Occupational Therapy) every morning! phew! But it's growing on me I'm finding I am enjoying myself...

Well there is not all that much to report from here, I am told that my Grandma continues to do poorly. So she really needs all your prayers right now, that would be greatly appreciated by all of us.

So to the reason I was going to write this post. I was talking with a friend on FaceBook and we got to talking about what I have experienced lately and how I was with God through all of it. Then that got me to thinking about my testimony. Most of you know that I was baptized in the ICU in Saskatoon. I was going to be baptize with my brother but obviously God had other plans for me, I ended up in the hospital. I was awake one night in the ICU and I kept thinking I should get baptized, I tossed and turned and couldn't shake the thoughts "you should get baptized, no time like right now to do it, believe and be baptized" So the next day I told my parents "you know what? I still want to get baptized, I mean I know I am going to get better but i would like to do it now, you never know what's going to happen I mean look it I was supposed to get baptized but now I'm in the hospital but I still want to do it" It probably wasn't in that many words I was really short of breath but the idea is there.

My testimony I had prepared to read was as follows:

Hey I’m Donovan and this is how God has been working in my life. At a very early age I was diagnosed with Cystic Fibrosis. In short Cystic Fibrosis is a terminal disease that mainly affects the lungs, causing the lungs to be plugged and infected constantly. After many infections the lungs become scarred and useless.
I was privileged to be raised in a caring, Christian home. I remember accepting Jesus as my Lord and Saviour as I prayed with my father at the end of his bed when I was just 4. I remember a feeling of a huge weight being lifted off me and a feeling of becoming brand new.
As time went by I knew God was with me as I went through the good times and the hard times But as the years progressed and as I got older, my faith became comfortable, but I slowly became independent of God.
Through junior high years my health and faith dwindled hand in hand. I was going through the motions of being a Christian outwardly, but never communicating or setting time aside for God, I guess you could say I became spiritually idle.
Summer of gr. 11 at plunge (a bible camp for teens) one of the last nights the speaker had an alter call.   So that night I gave up walking on my own knelt and prayed, and just explained to God exactly what I felt, I felt numb, joyless and I couldn’t deal without him any longer and I wanted him back.
Since then I have started a closer walk with God, even though my faith was renewed it wasn’t near perfect or easy. Near the end of Gr. 12, I became very sick and during this time God had a plan to test my faith. While I was in the hospital I began to cough up blood. I quickly made my way to the sink and spat it out hoping it was a small amount, but quickly I could feel my lungs fill and begin to rattle with blood again.   Collecting my thoughts, I began to slow my breathing and praying to God, “please God slow this down” After praying I felt this big sense of peace and comfort. Soon after notifying the nursing staff, I was transferred to Saskatoon Hospital, and although the bleeding episodes continued for 4 days, I was never worried or afraid and I just felt at peace knowing God had his hand on me. If I felt any fear or worry I would close my eyes and start praying.
I am going to be starting a new journey in my life as I begin the stages of preparing for a lung transplant. I know that it will get very tough and there will be a lot of uncertainties but as it says in Gods word, “I can do all things through Christ who strengthens me”. This is a promise that has kept me going when I feel overwhelmed or like giving up. I stand here before you not knowing what my future holds but I can tell you that I am ready to obey the Lord and be baptized. Although I am not sure of what lays ahead, I know I am ready to accomplish whatever God has planned for me.

Okay. . I basically told God, I am ready, take everything, I am ready to move forward. I now believe not only did he answer that prayer, but hey he threw in lungs with that answer. It may not have been in the fashion that we would want or expect. But I was in his hands the whole time.

The past few years of my life have been on hold. Mainly because of my CF. Frequent illnesses, hospital stays and 24hr fatigue prevented me from moving on with my life. I was unable to go to school, although accepted because frequent illness would not allowed me to complete classes, frequent illnesses didn't allow me to go out and live. But like I said before God has answered my call, gave me a miracle and has allowed me to begin to move forward.

Here is something else I recall, another answer to prayer. Another miracle. The night that I began to fail quickly was the night I started to cough up blood at RUH. It was another sleepless night, with a low fever, I started to cough....and like in my testimony I knew right away this is blood. I spat it out , called out to the nurses and they quickly came...but I knew something was wrong right away,... there was lots ... and frequently I was quickly filling up the cup I had in my hand, so they got me a kidney basin. I began to cough more violently filling up that basin and moving on the next one...I spare you the more graphic details...
Once I realized how much I was coughing up and how frequently I asked for my parents to come... and the staff was able to get them... This was the point that I was wondering if this was going to be it. Am I going to do right now? This is a lot of blood and its not stopping... God are you going to take me now? I made no deals with God, nothing like " if you let me live i will do this and that" I didn't do any of that, I did look back on what I did for him decided that I was happy with that, and Told God if this is it it's okay, if I'm not done your work let me continue.
Well contemplating all this my parents showed up, at this point I was shaking, they started 4 IV lines, were giving me tons of fluids and taking my BP and sats continuously ... I remember taking my dads hands asking him to pray with me, he prayed asking for peace and for the bleeding to stop... I prayed with and him ... and it stopped. almost instantly. a few extra coughs with no real amount to them... after that I was wheeled downstairs for an emergency bronch.

Looking back, I can't believe that I was at peace with what was going on, sure it was scary to be thinking this is it, but I was o.k with it, I was ready to go if that was his will.

So i guess the reason for this post is to say, God is real, he is with you and me. He can answer your prayers and give you peace. Just ask. He listening.

Together Again!

2008-11-01T23:08:00.004-06:00

After a separation of over 3 weeks, the longest in our 28 years of marriage, Laurier and I are together again!

Mom was doing quite poorly the last few days, and we wondered if her time was at hand. Lots of breathing problems, and increased weakness. After much deliberation it was decided I would not go to Edmonton as planned, but that Laurier would come home. His sister Alice and Katie took his place as Donovan's support people. It is so nice for us to be together again. We're taking it day by day, and if mom improves I'll go back to Edmonton with Laurier sometime next week. Stephen will come along until after the Remembrance Day weekend.

As well, my brothers Greg and Peter came in from BC, my sister Cathy from Regina and Jewel from S'toon district, and including my sister Ghislaine from town and myself, the whole family is together for the first time since my father's death in '95. I think the reunion has caused mom to rally. She is now much more alert, and breathing better. We're all hanging out at the hospital and taking shifts through the night. I'm sure we're making the staff a little crazy with all our fussing and doting on mom, who, by the way, is lapping up all the love and attention. It's hard to say which way it will go with her, but we are thankful for the time we have together as a family, and this chance to express our love for mom. Her hip is healing, but she is very weak and plays out quite easily. I thank you for your prayers for mom. God is again proving to be our faithful healer and provider.

Donovan is feeling well and now over 130 lbs, gaining a little each week. He had to restart his nightime insulin shot as his morning blood sugar was consistently high, but he was able to decrease his daytime insulin. A little side effect of the anti-rejection drugs is "pruney" fingers and palms, they appear to have been submerged in water for too long...but we can live with that! He continues to make gains in his daily physio regime, and his only problem these days is the beginnings of boredom with the whole "getting better" routine. We are so thankful for all his progress, so thankful for all the prayers for Donovan. Six weeks and counting till he comes home!!!

Off to bed as I'm on the early shift at the hospital...

God Bless,

Beth

Donovan's Grandma...

2008-10-28T23:52:00.002-06:00

Hi Everyone,

As mentioned a few days ago, Donovan's Grandma, my mom Pearl fell and broke her hip last Wed. The repair surgery was a success, and she was only in the ICU a day. Yesterday she began to cough, and today she was in a great amount of respiratory distress. It was very distressing to me to see her struggle to breathe in much the same manner Donovan struggled just a few weeks ago, prior to transplant. (He, by the way, continues to breathe very easily, thank God!).

The doctor is trying to unravel mom's medical mysteries, and to discover why she suddenly appears to be having congestive heart failure. They removed a great amount of fluid from her lungs this evening, and she at last report was able to rest. Could I humbly ask you to pray for my mom, that her distress would be aleviated and that she recover fully from this episode and live to enjoy her repaired hip? It does appear to be healing, and prior to all the breathing trouble she was mobilizing with much reduced pain. Thanks everyone!

I have a ticket booked to fly back to Edmonton this Saturday with Laurier's mom. I don't feel very good about leaving with mom this frail. Stephen was to join us with Amy the week following. It would be so good to be together again! I need wisdom as to whether or not I should leave.

Laurier and Donovan were able to travel to Katie & Kurtis's house in Leduc for supper today. Also check out their recent post to the blog. They're doing well, and Donovan reports increased weight challenges in the gym. Did I also mention his weight gain? Up 7 pounds from his hospital discharge weight! Awesome! In the midst of my challenges with mom, we still have so much to be thankful for.

I must admit that I'm feeling a little worn out and discouraged and torn in a few directions. It would be wonderful to have mom get better and be able to carry on with plans to go to Edmonton.

In the midst of this, I'm so thankful that we know God is faithful(we do know this!!!) and able to "supply all our needs, according to His riches in glory."
So tonight, I will trust Him for sleep, for healing, and a fresh supply of grace for tomorrow....

Holding the hand of the One who holds the future,

Beth

Thank you! - A post from Donovan and Laurier -

2008-10-28T23:28:00.000-06:00

Thank You! - A post from Donovan and Laurier -

So things are settling down, over a month post transplant and we have finally settled into a daily routine "at home" here in Edmonton. Looking back through this whole process it is obvious that my family and I could not have made this journey alone. We could not have done it without the grace of God or His blessing of your friendship.

Now that things have settled down I know that most people won't be checking "the blog" so religiously, so I would like to send out thank yous on behalf of my family and I. There are so many people to thank for many different reasons, and I know that there will be some people left out unintentionally, so my apologies in advance!

In the beginning of this journey we were so thankful to have friends and family at our side. As we continued on through the many peaks and valleys, the support grew and grew and grew. It has been overwhelming to experience this amount of generosity. I have to admit that this support has brought tears of joy and still does when we reflect on everything that has been done for us this past few months as well as in years gone by.

My coworkers at Sears in Prince Albert,

You have proven you are all more than just co-workers with the fund raising efforts and thoughtful gifts. I am still amazed that even though it has been over a year since I last worked along side you, you have kept me a part of the Sears family! Thank you so much for the photo frame. I have already loaded some of my photography on it, and it looks great. Thank you so much for all the work of the bake sales. The money raised will go toward expenses in Edmonton. Thank you from the bottom of my heart! I will make sure to stop in and visit as soon as I get back to Prince Albert.

To the Prince Albert Alliance Church and Mom's Morning Out group and Cross Roads Pentecostal Church,

We would like to thank you for all your prayers, encouragement, emotional and financial support. Thank you for being a church that actively cares. Your prayers have carried us through the most difficult times and are still being felt. We were astounded by the generosity of the congregation. Your financial gifts will assist us through our stay here and are providing us with a peace of mind during our time here. Thank you so very much!

To The Most Wonderful Pediatric Staff at Vic. Hospital,

Thank you for your financial gift, and all your encouragement. Even though I am no longer in your care, it is truly touching to know that you still care and think of me. There is so much more to thank you for, your hospitality, your actions which were above the call of duty, your unmatched bedside manner, all which made long hospital stays bearable. You are terrific nurses, and your care saw me through many crisis. It is due to you that I was able to stay as healthy as I did for many years, and able to continue to live life as a child and teen as normally as I could. Thank you so much!

P.S thanks for overlooking our rule breaking habits : )

Saskatoon University Hospital Staff,

I would like to thank you for your kindness and care during my failing health. Thank you for helping stabilize me so that I could make the trip to Edmonton for my new lungs (which are great by the way)!

To the greatest soccer moms and dads,

We greatly appreciate you guys taking Stephen under your wing this past season. It was good to know while we were away, you made it possible for him to have the opportunity to take part in a once in a lifetime opportunity. Thank you also for your help with our finances here in Edmonton, it's truly incredible that besides helping Stephen you have also reached out to us here in Edmonton. We really appreciate all you have done!

To Friends and Family,

We would like to thank everyone for the time and energy you have generously contributed. We would like to specifically thank you for all the prayers, encouraging cards, the uplifting visits in the hospital (I know it was a long trip for many of you!). We also appreciated all the assistance with looking after our needs back home. Your love and support have made all the difference.

To the Poetker family

Thank you for looking after Stephen while we have been here in Edmonton. Thank you for giving him a loving home away from home as well as a family. Even through the troubling times we had peace of mind that Stephen was in good hands.

To Elizabeth and Sandy and Laurie E.,

Thank you for taking care of my precious Scout! We know he appreciated the attention and exercise, and he'll never forget all your love. You've made a friend for life!

Thank you Verla,

Thank you for opening your home to us, we are so glad to have been blessed with a friend like you. We thank you for your prayers, your friendship and a home away from home.

P.S Even though we moved in like cockroaches! - Beth

To Prince Albert Lydale Staff and Wee Care Preschool,

Thank you for your understanding and compassion in allowing our family to be together during this crisis and recovery period. This leave of absence has allowed us to focus on family needs.

My new lungs are still working great and I credit this to all your love, support and prayers. My days are very busy, each morning is filled with physio, clinics, labs, pulmonary, occupational therapy and nutritional/diabetes training. I'm still gaining both weight and strength and I am working very hard to achieving my goal of being home for christmas! I look forward to seeing everyone once again, this time with no tubes attached!

God Bless,
Donovan + Laurier

The ICU....again.....

2008-10-23T22:11:00.002-06:00

NO, it's not Donovan. But I did spend a good chunk of the day in the ICU, here in Prince Albert.

I was awakened in the early hours of the morning yesterday, one of those heart-stopping phone calls I love to hate. It was my 83 yr. old mother's care home, telling me she had fallen and was being transported to hospital via ambulance. A good deal of pain and one x-ray later and the diagnosis of a broken left hip was announced. She is an anasthetic risk, and quite frail, so we were all concerned, and spent the day sorting out options and keeping her well medicated. It was decided to operate this morning using a spinal anasthetic, and then move her to the ICU for observation until tomorrow.

So I spent a good deal of last night in a narrow vinyl recliner, too much of me and too little chair, with my seriously doped-up and pain ridden mom calling out to long-gone family members at short intervals....hmmm, the stuff nightmares are made of! My sister spelled me off at 3 am, and I came home to attemp some real sleep before seeing Stephen off to school today, and , you guessed it, another soccer tournament! This one in Weyburn, Sk. and I'm so glad I'm not going along. The days of me being excited about a six-plus hour trip on an old yellow school bus are long gone!!!

Anyway, the surgery was quite successful, and mom is now comfortable (mostly) with pharmaceutical aid. She'll be moved to the surgery ward tomorrow. We will have to see what the plans are for her longer term, and if she'll be able to return to her care home.

On the lighter side, she is quite funny between the effects of narcotics, and her very poor hearing. Example: Mom: Beth, what are you doing.
Me: sending Laurier a text message.
Mom: Sex message! Why are you sending him a sex messages???

You just gotta laugh!!! So, you never know what life's going to throw your way next. I was quite happy at the thought of never seeing the inside of the ICU again, ever!!!

Just got off Skype with Donovan, Laurier & my blossoming daughter Katie, who tells me she & the world's cutest grandbaby are doing fine. Donovan also continues to do well. He is now cutting back on insulin, seeing if his tuckered-out pancreas can begin to kick in at all. He'll monitor his morning sugar, and if it rises too much he'll have to increase his needles again. How about we all pray that this is the beginning of the end of his diabetes? Thank you!

As well, he bought home the pulmonary function testing device, which will enable him to do daily flows. The words "every day for the rest of your life" were used in a very serious tone, along with "patient compliance" etc. The docs really, really want to see these lungs last the distance, and we intend to do all we can at this end. Did I mention Donny's "flows" are now 74%? We haven't seen those kind of numbers since he was about 10 yrs. old! Awesome!

One more blessing for us all to ponder. Our newly transplanted friend Lauren is out of the ICU. Just over a week along for her. I'm so very happy! Now let's all say a few prayers for Kristen to also get her lungs. Thanks everyone!

By the way, did I mention that Donovan is getting slightly "pudgy"....and that his cheeks are the nicest rosy shade? We have so very much to be thankful for. I'm off to try and get some seriously needed sleep, and gear up for another day at the hospital with mom. Have a great night all!

Beth

The Heart of the matter...

2008-10-19T18:34:00.003-06:00

A beautiful clear & chilly weekend in Prince Albert.

Stephen's school soccer team (Carlton) returned from their Swift Current regional tournament sporting shiny gold medals, which means they will go on to provincials in Weyburn next weekend. The challenge now remains fitting a little time with the books in between soccer games!

I kept busy this weekend attending an Arrogant Worms concert with friends on Friday night...hilarious comedy & music. So good to laugh! Got the carrots dug, planted the rest of the bulbs, and am still thinking about putting away the hose...and fitting a car in the garage. Really not into scraping windows.....

Still keeping in touch with Laurier & Donovan via Skype, but I no longer try to give them beverages or feed them....(see last post). Donovan is still making gains in the healing direction...he has officially ditched the walker and seldom uses the cane. No more chair in the shower, or rails around the toilet...and he managed to gain a couple of pounds last week as well. He has officially moved downstairs to the suite in the basement of the house where they are staying, as stairs are no longer a problem. Wow!!! It just keeps getting better!!! I'm really counting on the docs discharging him from rehab by Christmas.

One little matter for prayer would be an issue with Donovan's heart. As mentioned in an earlier post, his resting pulse is far too rapid, so a med was begun to slow it down. Donovan continues however to have episodes of his heart rate speeding up, coupled with flushes and a fainty feeling. A little concerning. Some test were done, but so far nothing shows up. Docs think his heart could be irritated by stitches where the connections were made in transplant, but often this shows up earlier in healing, so they are a little puzzled. Let's just ask God to sort this out for us, He's done a great job of everything else!!!

And.....our friend Lauren, the 18 yr. old who was transplanted last week is doing well! I believe her respirator was to be removed this weekend. We are so thankful for her lungs, and to see another young person have her well-deserved chance at life!!! Please remember our other friend Kristen in your prayers, as she awaits her lungs. She has been on the list since spring, and waiting can be so tedious. What a wonderful early Christmas gift a brand-new set of "breathers" would be!!! Will keep you posted on her progress.

Donovan tells me he's working on another post, so keep on checking the blog. I know everyone is far more interested in hearing from the horse's mouth, as it were. I'll also try to get a few more pics posted.

God Bless,

Beth

What's under the sink?

2008-10-16T22:48:00.002-06:00

Pipes!!!

And that's what Donovan is working on in the gym these days...getting some "meat" on those pipes! He was given the go-ahead to start upper body work, because it's now been over a month since the "shark bite" so he's had some time to repair those unkindly-cut muscles. Now it's all about re-building. Look out Arnie!

Had supper with Donovan, Laurier & Katie tonite, via Skype (webcam) and I have to say it's the next best thing to being there. Clear picture, great sound...when it came time for tea after our meal, I actually took out tea-cups for all of us!!! I know, I know, I'm losing it!

Some terrific news (I hope) from a friend at U of A hospital. If you remember a few weeks back I asked for prayer for a young girl named Lauren, also CF, waiting for transplant? Her mom emailed me yesterday that lungs came in for her. Her surgery was all day yesterday, and I haven't yet heard back, but I'm believing for the best for her! Please continue to pray for this wonderful family. Also, please remember Kristen...she needs lungs, and soon! Sign those donor cards, people! Thank-you!

Not too much new to report here at the homefront, just trying to get all those pre-winter chores done before the white stuff appears. I planted some bulbs for spring, emptied flower pots & am thinking about putting away the hose. Must also remember to dig up the carrots before the dog gets them. Yes, we have a carrot loving hound in the house!

I'm trying to get dates set as to when I'll get back to Edmonton, but it appears Stephen will be busy with soccer until the Second Coming...he goes with his school team to Swift Current tomorrow, and then again next weekend if they win. So, yes, it's me and Scout for the weekend.

It was wonderful to be back at Wee Care Preschool, 20 smiling faces and my terrific "boss"/friend....these little ones are a fantastic distraction and focus for life right now. Who knew that cutting out paper pumpkins, big hand over smaller one could generate such joy? I am so blessed.

Also talked with daughter Amy tonight about Christmas (speaking of the 'white stuff') shopping etc. and she said, "Well, I think we all just got our Christmas present for this year!"

And I couldn't agree more. So, under the tree this year will be Donovan, a big red bow around that impressive chest incision!

An early morning to get Stephen to that bus for Speedy Creek, so I'm off to hit the hay... and contemplate once again, God's goodness and faithfulness to us.

Hoping you'll find Him faithful in your life,

Beth

Alone again, unnaturally....

2008-10-14T22:27:00.002-06:00

Hello again from PA, where the lonely creaking of trees in the wind and the distinct absence of doggie nails clicking on the laminate floor was driving me mad last night....not too acustomed to being home alone! Glad it was only for one night.

I arrived to my very empty, forlorn house last night but picked up my pooch from his babysitter Laurie this morning...who only spoiled him a bit last week, right Laurie? I stocked up on groceries, visited my mom, marked my X on a ballot, then welcomed Stephen home from PEI around 9ish this evening. He was very happy but tired and said in his few words that they had a blast. He actually spent some money this time around, and bought home a few souvenirs. (On his last soccer trip he only bought a small tin of mints....who does he take after? Not mom!) Guess what he bought you, Donovan?...you'll have to wait till we come down there again to find out....They finished in seventh place out of 15 or 16 teams, but only lost one game, I believe. I'm not very good at stats or scores, but I know they played their hearts out, and have had a phenomenal season. I believe Ontario took the gold medal. I'll get Stephen to correct me on all the technical stuff tomorrow.

Good news from Edmonton arrived via text message from my boys at the hospital this morning....no more fluid-lowering drugs are needed, so two meds can be discontinued! (this brings us down to about a mere 28 meds) Also, ta-da! Lung function scores are on the rise again!!! FEV1 is 68% and that is very good news indeed! Laurier and Donovan also purchased a blood pressure cuff, and Donovan will take his own blood pressure daily from now on. He'll bring the results in to clinic each week. The next step, probably in a few weeks time will be for him to do his own lung function tests at home as well. He'll receive training on this from the hospital folks. Medical degree to follow in the years that come.....

More good news is that Donovan is feeling like getting out a little each day, even if only to pick up a few things at the grocery store and the like. This means he's getting stronger and the new lungs are supplying him with energy. Isn't God amazingly good to us!

Donovan's going to work on setting us up for web-cam chats on the computer. I think this will really help us not to miss each other quite so much. Once I chat with Stephen's teachers I'll figure out when we can head back to Edmonton. I think it will do these brothers a whole lot of good to spend some time with each other....

I have to mention again the generosity of so many as we have gone through this trial and triumph....I came home last night to a beautiful letter from someone in our church, totally unknown to me. I wept as read of her support in prayer as she followed our journey through the blog and updates at church. She belongs to "Mom's Morning Out" a group I was a part of for many years, and they enclosed a cheque to help us along. Thank you Carissa, your words touched my heart! And thank you so much to "Mom's" your support is so appreciated! Your prayers are our lifeline....

Sears held another bake sale for Donovan this weekend, which I'm told was a huge success. Thank you to my sisters Ghislaine & Jewel, my mother-in-law Laurentie, and all the bakers at Sears! Donovan is so appreciative of you, as we all are. The support "back home" means so much and helps him journey on each day.

I was chatting with a friend today about what this new life could mean to Donovan...school, a career, time to explore his passion for photography, who knows? I think the main thing is that these new lungs give him a chance, not a second chance, but a first chance.

Life before transplant meant treatments, drugs, rest, hospital, and so many days just not feeling well enough to do anything. He really was not able to contemplate more than the next day ahead. He didn't have the mental or physical energy to figure out what he wanted from life, or what he was interested in pusuing. How wonderful that he now will have time and energy to get that chance. We are so excited for him! Praise God for this chance!

While we thank you for all your prayers for Donovan, we ask that you continue to pray these lungs will become "one with him" ----no rejection, no infection. So far, so good!

Praise God with us that the med. schedule is now far less daunting, as are trips to the hospital. You can get used to anything after a while, it seems...

And today marks our one month and one day transplant anniversary...while we are in awe of all that has happened, we also remember our precious donor family. Please hold them in prayer as they grieve the loss of their child/sibling. Please ask God with us that they recieve an extra measure of grace and support, supernatural strength and healing to go on each day. We came so close to losing our son, I cannot imagine their grief at this time.

Well, off to bed and watch the election wind-up rhetoric. That should lull me to sleep, I'm sure!

God Bless you all,

Beth

A post from Donovan

2008-10-13T12:25:00.002-06:00

So my mom has been nagging me to post here for a while now, so here it goes.

First of all I would like to thank everyone for their support, it has been more than we could have imagined. To know there is all that support back home is very encouraging and keeps me going each day!

So what to tell you all! Well the most popular question is "how does it feel to have "new" lungs?"

well to be honest at first (being in the ICU) I was totally baffled and confused when I woke up. It was a good few days before I understood that I had the transplant. Having missed a couple weeks it kind of all came crashing down one evening when I finally asked the question "what happened exactly???"

In the early days of post transplant it was hard to get used to breathing easier. Its hard to described exactly. So to help I guess I could described what it was like to breathe with the CF lungs.

Well the best way to described it is I only had about 30% lung function ... so when I breathed in I was only really taking a less than half breath in. When I would breathe in it was tight, noisy and usually followed by a good productive mucus-e cough. Especially at night when I was lying down I could hear myself breathing, each crackly and wheeze.

And now nothing!

It's so weird breathing now is best described as easy. To take a full breath takes only a second instead of 3 or 4. When I wake up now I'm not all plugged up and breathing shallow, my showers don't cause me to hack and throw up. It's just easier now. No more waking up an hour and a half earlier to do nebulizers and physio, no more nightly treatments before bed, I can just brush my teeth take pills and go to bed.

I have been going for pulmonary function tests (test to measure how much air my lungs can hold and how well they are working). how the test works is I breathe into a machine normally, then take the biggest possible breath in and then blow it out as fast and as long as possible. Now normally after one blow or test I would be hacking for a minute then take 2 min to catch my breath. It wasn't until last week after my 3rd or 4th time going for these test after transplant that my mom mentioned something like "hey how does it feel not to be hacking?" and I had to think about it for a few seconds until I remembered turing red and breathless after each session!

I think that about describes what it is like to have new lungs! Thank you all again for your prayers and support!

Donovan

Going home pictures...

2008-10-11T16:52:00.019-06:00

All smiles as we leave L'hotel U of A...which was "home" for Donovan Sept 8-Oct 6, although he wasn't really aware he was there until about Sept 14...long enough though! So happy to be at our home-away-from-home, our friend Verla's house until we return to Prince Albert, around Christmas...

The Shark Bite!

2008-10-11T16:40:00.004-06:00

This was taken last week, and as you can see, the scar is quite impressive! It healed quite well, and the staples were removed a few days ago. The other scars are from four chest tubes inserted during the surgery to drain fluid around the lungs. The chest tubes came out slowly in the weeks following surgery. There is also another scar (not seen in this photo) on Donovan upper right thigh, from the operation to connect him to the ECMO (life-support) machine prior to surgery. The small white plastic "button" on the lower right side is a g-tube, used for connecting to a feeding tube to supplement nutrition. On Donovan's left arm is a pik-line, to access a vein for IV meds. Lots of scars, lots of reminders of this miracle! But doesn't Donny look fantastic? I think the smile and noticeable lack of oxygen tubing says everything!!!

Photos

2008-10-11T16:30:00.010-06:00

This is Laurier with Donovan in the ICU following transplant, Sept 13. Donovan is breathing with the assistance of the respirator which was removed on Day 3. At one point there were seven I.V. pumps delivering various medications to Donovan. We had to mask, gown & glove before entering his room, not to protect Donovan, as we thought, but because Donovan had come from another hospital, and they were concerned about the possible spread of germs from there...

Look Ma, no staples...

2008-10-10T23:03:00.002-06:00

Out they came, all 28, at our clinic visit this morning. A little pinching, but not bad. So now Donovan has a long, armipit to armpit "clamshell" reminder of his double-lung miracle! Healing very nicely, too, but he says it feels weird, because the area is numb. Must have severed nerves or something.

Taking out the stitches that closed the holes where his chest tubes were inserted was a little trickier. I guess they wanted to make sure those incisions were very tightly closed to prevent anymore air-sucking which happened with the removal of the first tube. Anyway, there was much grimacing and teeth-clenching as those came out...and that was just me!!!

Everything else went well today...saw Donovan's new x-ray, very nice indeed! No more puffy, white, clouded, scarred hard-to-read x-ray, just clear lungs! Beautiful! The doc also says he's finally happy with Donvan's blood-work. That red-cell issue is now near normal. The anti-rejection levels which will be frequently checked are fine as well.

Over supper this evening we were discussing (reminiscing, I guess) about those early post -op days in the ICU. It's interesting to hear Donny's side of things. It really took about 5 days for him to realize the surgery had actually occurred. Even after we thought he knew what was happening, he was still in Saskatoon in his mind, and actually thought things weren't going well, and that was why all the lines and monitors...so scary for him. I'm so glad it's all over!

His new computer ( a Mac, complete with newest, biggest monitor) is a wonderful distraction and activity for Donovan at this point. He's loaded tons of photos on it, and is figuring out all the various programs, also starting to email friends, make plans for when he's back home, etc. Welcome back Donovan!!!

No physio Monday, but there will still be bloodwork at 8:30 a.m.). That means we'll have to get Donovan out for a little stroll, to replace his daily treadmill, so hope we have some good weather. There are the cutest wild rabbits in the neighborhood, so maybe we'll have a bit of a photo shoot as well.

I'm starting to dread leaving on Tuesday, but will make plans to return with Stephen in early November. I hear it snowed back home, one more reason to stay here!

Think I'll still be able to plant my tulip bulbs? Shouldn't have procrastinated that when we had a few days of 23 degrees the week I was home!

Hope you all have a great weekend, and find many reasons to be thankful...

Basking in blessings,

Beth

"Now I can do handstands"

2008-10-09T22:30:00.002-06:00

That comment was made by a very interesting 19-yr. old we met in the lab at the hospital this morning. Picture this, a very stylish "emo" type kid, tight black jeans, "indie" band t-shirt, dark black dyed hair with two red streaks over the ears, pieced eyebrow, thick silver link necklace, nails polished black, reeking of sullen "no-one understands me" attitude...get the picture? Maybe know someone like that?

He and Donovan were side by side in chairs while the "vampires" in the lab did their thing this morning. "Dave" shared that he'd been transplanted (double-lung, also CF) about 5 months ago...As he started to share his story, the goth-like trappings faded into the background, and the excitement of his new life took over. With bright eyes he stated that he'd never been able to do handstands pre-transplant, but now he can, he skips the elevators in favor of stairs, and has also gained 30 pounds! It was such an encouragement to hear this story, and it put a spring in our steps as we had long appointments and another full day at U of A.

Today an exta 5 minutes were added to treadmill time in the gym, and more strides were made on the BTE machine in occuptational therapy, a device that measures and builds strenght for tasks of daily living. Today after Donovan's afternoon nap, I suggested that perhaps I could help him downstairs where he could watch TV. He hasn't yet tried the full flight of stairs. A little later, as I was preparing supper downstairs, I turned around and there he was! He had made the trip down all by himself!

My friend Verla and I went for a long walk the other night, and spent some time in prayer in the cool autumn weather. One thing we asked God for was to relieve the diabetic symptoms that the transplant has left Donovan with. This morning, the diabetic specialist tells us she's very pleased with Donovan's sugars, and even decreased his nightly long-acting insulin. As the prednisone is decreased, we hope to also see the diabetes get better....it does in about 50% of CF transplant cases....so with a little prayer....maybe....

The "new parent" feelings I spoke of in a previous post are still with us. We got home to feed the "baby" on schedule the other day only to discover we were out of insulin, which the pharmacist forgot to retrieve from the fridge with our drug order, so had to rush right back to hospital. We try to get as much ready the night before to make it to the hospital earlier each morning, and it's coming, but still challenging to get all the meds ready, snacks etc. And today, we wasted about 15 mins. in the wrong waiting area...incorrect instructions on our daily schedule...so frustrating!

Donovan tried to post on this blog today, and got a few paragraphs down while we were watching a movie tonite, but unfortunatley a computer glitch caused him to lose the information...but keep checking in and I'm sure it'll appear soon. He also picked up his guitar for the first time since transplant today...it was sure good to hear him strum.

Tomorrow we have clinic again, and hope to hear all is well, as I'm sure it is. We look forward to a much less busy weekend, and perhaps a trip to Laurier's cousin's in the city to visit with them and also for Donovan to meet their dogs, since he misses his beloved Scout! I think a little pet therapy is in order, don't you?

And on the soccer front, we've been in touch with the PA Celtic in Charlottetown, and so far they haven't lost a game! They haven't won either...two tie games of 0-0! Perhaps tomorrow they'll see victory, amid the wind and rain...Go Stephen, Go Celtic!!!

Off to bed, have a good night everyone, God Bless...

Beth

ps. Our friend Kristen spoken of in earlier posts, sure needs a new pair of lungs. How wonderful if it would happen this weekend, or maybe tonight? Let's all pray for her....As well, Lauren, another wonderful young lady at U of A hospital, will receive a donor lobe from each of her parents in early November if lungs don't arrive by deceased donor earlier. This family needs our prayers as well. Thanks everyone!

Lung Transplant Q & A

2008-10-08T16:29:00.002-06:00

I've gotten lots of questions about life post-transplant, so here's a little info FYI...

Q. Will Donovan's new lungs eventually get CF?

A. No, never, non, nyet!!! No, these lungs contain brand-new cells, new DNA. These new cells do not contain the defect that causes them to produce the thick, sticky goop that started all the infections in the lungs, the death knell for CF people. Yippee! No more chest physio, ever!!! The deadliest part of the disease was removed from his body when the old lungs were replaced. Isn't that cool?

Q. So, does Donovan still have CF?

A. Yes, he still has CF everywhere but his lungs. All the glands in his body that excrete (the excretory glands) will still be affected, as nothing about them changed with the surgery. That means he still has CF in his sinuses, and will need to watch out for sinus infections, he still has CF in his pancreas and has to take enzymes to digest his food, and he still excretes too much sodium in his sweat, and needs to be careful about dehydration. But we can handle all that...

Q. So, his new body has accepted the new lungs?

A. So far, so good. But rejection of any new tissue is a life-long concern. It's not only a worry in the early part after surgery. Medication for anti-rejection began in the operating room, and will continue forever. They tell us everyone has some rejection episodes, some worse than others. Donovan will do daily "flows" or breathing tests. If these trend down over time, it could mean an infection or rejection.

Q. Won't anti-rejection drugs suppress his immune system?

A. That's the idea, to fool his body into thinking these new lungs are his own by weakening the entire immune system, and lessening it's ability to fight back. These drugs will make him more susceptable to common viruses and infections, so handwashing is a first line of defense. He will need to make changes in his life such as avoiding people who are ill (don't visit with the flu!), avoiding crowded theatres, elevators and the like. This is especially important in the early stages of recovery from surgery.

Q. How many medications is Donovan on right now?

A. Adjusting to this new med. schedule is a little mind-boggling at the moment. Here's the new schedule, but it will change with each Doctor visit. Many of these meds are repeated at night, and there's a few for noon as well, but you get the idea.

8am---cipro (antibiotic)
breakfast....blood sugar test & insuling
Folate (blood builder)
enzymes (digestion)
Potassium
Valcyte (anti-viral)
Vitamin D
Adek (more vitamins)
Metoprolol (for heart beat regulation)
Cellcept (anti-rejection)
Prednisone (anti-rejection)
Magnesium (supplement)
Maxeran (nausea)
Pantaloc (stomach)
Septra (antibiotic)
Voriconazole (anti-fungal)
Lasix (for excess fluid)
Azithromycin (antibiotic)
Chrorhexadine mouth rinse (4x/day)
Cardazem (heart)
Percocet & tylenol (pain) but we're not using much
Calcium
Tacrolimus (anti-rejection)

Q. How long does it take to recover from surgery?

A. It takes about six months to a year to fully recover from double lung transplant, and that is best-case scenario. Let us remember that Donovan was anything but, going into this venture. His recovery right now, however, is best-case!!! Isn't that remarkable?

Q. Why Physio & Rehab for 2-3 months?

A. Because most people having lung transplant are weakened with the disease prior to surgery... they have had infections and been unable to live a normal life, so they need strengthening, all over. This rehab helps them to fully utilize the new lungs, and gain muscle weight back. In Donovan's case, his body was eating his muscles as a means of fuelling his body when he was so ill prior to surgery. Also, being in bed for so long weakens the entire body. Physio is going well, and strides are being made every day. Today Donny was on the treadmill for 15 minutes! Balance is also affected by the surgery, so we're working on that, as well as core strenght, hand grip strength, every muscle group head to toe gets a work out. It's exhausting, but worth it!

Q. Will Donovan ever know who his lung donor was?

A. No, there are privacy laws in Canada that prevent contact between the recipient and donor families. This is in place for the protection of all parties, but at six months we may write a letter to thank the family. I'm already formulating this letter in my head (you know me!), but really, how do you begin to thank someone for a gift so precious? Words fail me! The letter we write will be censored to make sure we don't give information that would lead to contact.

So, hope that answers a few of your questions. Feel free to ask, and we'll attempt to answer. Today we went to physio, occupational therapy, and then for an ECG and chest x-ray. Donovan's resting pulse runs into the 120's at the moment, so they're attempting to slow it so it can be challenged with exercise. Does that make sense? We're at the hospital from 8 or 9 ish till after 12 each day. Then lunch, some much needed rest, and a little time for computer or TV till supper. Sleep, repeat. I wonder what a weekend away from hospital will be like?

Blessings to all,

Beth

The Homecoming....

2008-10-06T22:47:00.003-06:00

I just read an email from a friend whose daughter just had a new baby girl. Got me thinking about having my kids, especially the joy of finally bringing that baby home from hospital, and feeling that, at that point, the new little one finally becomes all yours, your new baby.

Well, today at about 6:30 p.m. I bought my 20-yr old 5'9" 123lb. "baby" boy from the hospital, complete with all ten fingers and toes and a brand new pair of lungs! What a celebration! I hope to provide you loyal readers with photos at some point. Thankfully, unlike that homecoming of all those years ago, he now sleeps thru the night (with a little pharmaceutical aid), and feeds on schedule, to keep those blood sugars stable.

Donovan walked tentatively into our friend's back door to avoid those difficult to navigate front steps. He's using a cane for balance, and a four-wheeled "friend" for longer distances. He is now much less high tech, as the last of the lines came out today, the pik-line into his bicep for IV meds was removed before we left hospital. I've got to tell you, it was like watching one of those magic shows removing the line, like a scarf trick! That line went on and on and on....it makes sense, because it went from his arm all the way to his heart....

We also came home with four big bags of meds from pharmacy...and a looooong list of instructions. We've got two pages of meds to check off, and changes will be made as he stabilizes even more. He really is looking well. One of the meds, prednisone is giving him some fullness in the face, making him look even more healthy!

We will return to hospital 5 days a week for physio and clinic checks, and will really be keeping a close eye on everything. Lots and lots of learning to do, but it is all worth every moment. It was so nice just to watch Donovan hang out on the sofa, open mail, and watch a movie on his new computer. Great to be home in Edmonton!

I flew in last night with my sister Ghislaine, who leaves tomorrow. She gave Donovan gifts from Sears, where he worked for a year...a digital photo frame and a collection of money toward expenses. Thanks so much, all you angels at Sears! Your support means so much. Donovan is touched by these expressions, and they are all helping his emotional recovery from this ordeal.

I also have to mention how wonderful and supportive our home church, Prince Albert Alliance Church, has been. I attended Sat. evening while I was home, and my friend Jackie, leading worship that evening called me to the front to give an update, unplanned. Now, anyone who knows me knows that I rate public speaking right up there with dental surgery!!! But I stumbled through, and then came a little more prepared to speak Sunday morning. I really hope, for those of you who were at church, that I was able to articulate a little of what this has all meant to us, how God has really been our Rock, and how your prayers have seen us through. Pastor Ron informed me then that the congregation took up a "love offering" for our transplant-related expenses. It truly blessed my socks off!!! Thank you, church family, thank you God!

These blessings will help us all breathe a little easier while Donovan's new breathers learn to do their thing, and become one with him! I was mentioning to a friend that since God's timing has been so immaculate through this, it wouldn't surprise me if the financial donations from all sources equalled Laurier's lost salary down to the cent. God is so faithful, as are you, my friends.

On that note, I've received a few inquiries as to where people can give donations...and although this is awkward to speak about, I think the simplest thing to do is give them to us directly. Again, thanks a million for the financial support, and trust we will "pay it forward" when the opportunity arises...none of know who will be in a position similar to our's one day....

Stephen will be in Charlottetown, PEI with the PA Celtic, right about now. If you happen to think of him in the next week, as we will be constantly, say a few prayers for protection, fair reffing, good weather and some darn good fun! Go Celtic!!!

It has been a long, good day. Off to bed, and hopefully a better planned day with an earlier bedtime tomorrow. We really need to be on schedule with eating & sleeping, just like with a new baby...not to mention working in close to 30 meds. We ask that you pray for adjustment for Donovan to this new routine.

Let's praise God for this wonderful victory, 23 days post-transplant, home, new lungs chugging away....we are so thankful.

Proud parents,
Beth and Laurier

Are you sitting down???

2008-10-03T22:52:00.002-06:00

Ta-da...we have a discharge date...Monday, October 6th! If everything goes as planned, that is. And of course it will. I'm joining my boys on Sunday Oct 5th, so I will be able to escort Donovan to his home for the next couple of months. Can't wait. How amazing is this news...? well, let's remember that Donovan's recovery was "supposed" to be proportionate to the condition he was in when he went into surgery...not good at all...he is continuing to defy all the odds! Being discharged 23 days post-surgery is astounding! It is best-case-scenario!

While we are speaking of good news...I like numbers. Take 7 for instance. For a white cell count? I'd call that perfectly normal. I've been waiting to hear that kind of number. It means no infection. How's 5 p.m.? That's the time of day it was before Donovan required pain medication today. Let's remember not 3 weeks ago his chest was opened much like the hood of a car....How's 50% ? That the improvement in even more of his strength exercises as measured by the machines in the physio gym....

A good day once again, and I hope you're not getting tired of hearing that, because I intend to keep on chronicling good days on this journey of hope. I'm so happy to hear that Laurier and Donovan took advantage of our lovely weather and had supper together at a picnic table outside the hospital. You facebookers may also note that Donovan changed his "status" so he's up and at 'em on the computer too. His friend Chantal is visiting for the weekend, thanks girlie, you're awesome!

On the medical front, there was teaching from dietary, and it was decided to discontinue Donovan's nightly tube feedings as there is risk of reflux entering his shiny, new lungs and causing damage there. We wouldn't want that! This means he'll have to consume tons of food during the day to help gain back lost weight, and to keep weight on, something Donovan's not been terribly good at over the years. However, he'll no longer be using so many calories struggling to breathe and fight infection. So, we'll see how this goes....

There's also been teaching on measuring blood sugar and administering insuling. It remains to be seen if Donovan will continue to be diabetic once he recovers. If he is, we'll just deal with it. Small price to pay for a new life!

Last night Donovan slept great, and he also had a good nap today. I guess they've got that insomnia side-effect under control. They woke him to go to a shower, get this, a stand-up shower! Yesterday & today! That's progress...no chair in the shower.

And I have had a wonderful week at home. The days have slipped by as I've shared our miracle with so many friends and family. I've had 3 lunch dates (no problem gaining back lost pounds here) and even gone back to preschool to visit the little ones. I've missed work so much! Great to see you, everyone!

I've also been overwhelmed by the generosity of my community. The pediatric ward here, which has been home to Donovan about a hundred times over the years, (he's been a patient many times since 'graduating' officially from pediatrics) took up a collection among staff, and presented me with a beautiful card and cheque. The level 3 nurses at the Victoria hospital are some of the most caring, dedicated professionals I've met in our multi-hospital journey with our son. They are angels and all deserve raise!

A co-worker donated her hours of work subbing for me and gave me cheque as well. I won't mention her name, but she is a truly special person, and I am so touched! Have I told you I have the best job in the world? and Laurie, you are the world's best boss. Your support means everything, as do your hugs! Thank you to Lynda and Debbie D. for lovely gifts also, you are incredibly thoughtful...and I'm thoroughly spoiled! My garden and plants are green and flowering and looking lovely. My lawn is cared for! my tomatoes are canned! You are all angels and I thank you from the bottom of my heart. Did you know Park Avenue is the best place to live? (Better than that other more well-known Park Ave)!

I also want to mention those who have simply listened as we have told and re-told both the scary and joyful moments on this journey. It's been so similar to a new mom who has the need to express the profound emotions endured during labor and birth. For me, both writing and talking have helped so much to work through the incredible scope of emotions I've undergone in the last month. Thanks for reading, thanks for being there...you are more than therapists!

More heart-warming news...Tonight Stephen's soccer team walked the red carpet before our local Raiders hockey game, and Stephen as well as a girl from the other team heading to Nationals were chosen to drop the puck before the game. I was so proud! When I mentioned how thrilling this was, coach Clark said "It's for Donovan" Awww, Thanks Team!!!

It's been a rocky road, but every gesture of kindness has been a hand up when we've fallen.

Here's hugs to all....until next time,

Beth

Amazing Grace....

2008-10-01T20:32:00.002-06:00

How often have I heard that old hymn, yet never really knew the meaning of "grace".....
I think I am beginning to have an inkling of what it means to really have received undeserved favor from God. As I have experienced the power of God at work in our lives through this time with Donovan I have also felt peace that passes understanding, something else I have rarely truly understood. Having had a little distance from Edmonton this week I've had time to ponder the wonder of all that we have been through, and wrestle with the idea that God poured out blessing on us...we are immensely humbled and grateful, but I still have this need to say "Why God, why now, why Donovan, why us?" Of course, the answer is very simple...."why not? I love you!" Something deep within me has changed, and I know I will never be the same. We can never be thankful enough, never deserving enough, I guess all we can do is live our lives to be a reflection of all we have received...and that will encompass all the days we have left....

As I returned home this week I also heard the devastating news of a traffic accident that claimed the lives of two relatives of friends in our local congregation. It is bewildering at the very least to hear of such loss, and feel such agony for these families, and on the other hand rejoice at the new life we've been given. All we can know is that God is in this with all of us, and feels the pain as well as the joy. All we can know is His love and His sovereignty, even when we don't understand....all we can do is continue to uphold each other, be Jesus for each other, "Be still and know that I am God".

In the midst of all my muddling things over today, I got a phonecall from Laurier who had returned to the place he's staying midday, which is a little unusual. After chatting a moment, he passed the phone over, saying "Here, someone wants to say hello" Well, imagine my shock when that "someone" was none other than Donovan! Out on a pass!!! Woo-hoo! He said the steps to the house were a little difficult to navigate, but he was enjoying a taste of freedome. I'm so thankful for our Indian summer...and a chance for him to take it all in. He continues to work extremely hard in physio, and apparently his calf muscles are in desperate need of a tune-up. Exercises are rated on a scale of 1-10, and he flunked "calf strength" with flying colors! But we know it will come....as will eventual discharge. Another day with 3 patients in a 2-patient room, and I'm sure Donovan is at least beginning to look too healthy to take up space on the ward!

Impatient as usual, I'm still waiting to hear the antibiotics are discontinued, but so far only one has been changed to an oral med, and I still haven't heard how red blood cell production is going...it's so hard being this far away, and not able to pester the medical people in person. Of course neither Laurier or Donovan is as information-oriented as me!!!

Soccer nationals for Stephen are only a few sleeps away and this week is very busy in preparation. A lovely banquet tonight to cheer the boys on, and motivate them to bring home some 'hardware'....we're so proud of Stephen and his whole team, who are working incredibly hard. Stephen's never been to Eastern Canada, so is in for a real treat. Of course there will be more soccer than sight-seeing, but never-the-less, quite an opportunity! And well deserved, as the next few early mornings as well as afternoons are spent in training....ugh, 7:30 a.m. running!

I look forward to seeing Amy home tomorrow evening...anybody want to buy her '91 Shadow? She's found herself a snazzy little Jetta to consume her paychecks for the next few years! She's bringing the old car home to buff up and put up for sale.

Well, that's life today. Off to tuck my young man in to bed, or at least start the nagging!

Love and prayers,

Beth

Beautiful Day....Beautiful News.....

2008-09-30T23:24:00.002-06:00

Just got off the phone with Laurier who tells me that the weather in Edmonton was even nicer than here in PA today! And that was just the beginning of his positive report....

Things are really picking up speed with Donovan's healing. Today was a very busy day of learning to keep scrupulous records of anti-rejection meds....they need to be taken at the exact same time each day, and recorded.

Next was pulmonary function tests...and guess what? The new "breathers" are working at 60% (that's the fev1 number, the amount of air exhaled in one second, an important reading for lung function) and this is great for a first test. It will take about six months for the lungs to kick in to high gear. Each day Donovan will record his blood pressure, pulse and PFT (pulmonary function) numbers, and brings the info into clinic, where they will look at the trend. This will help him to note if any rejection is going on.

Then, on to the gym where they are really cracking down and getting Donovan to practice stairs, in and out of the tub etc. and see just what kind of support equipment he may need for a while at home. It's going to take a while to build that muscle strength that we all take for granted. He is now able to get up off a chair or bed unassisted. Yay Donny!

The swelling of the feet and ankles is finally subsiding, they tell me....The slippers we bought Donovan a week or so ago are falling off his feet now. I know this will make him feel a lot better, not having to look down at puffy feet.

Believe it or not, they bought a third roommate into Donovan's shared room...and yes, there is only room for two beds! They jammed a third patient between the two for the day! I can't imagine how crowded it was! They did find a room for the poor soul by evening...

We are so pleased with how everything is going, but just a few items that are still concerning. One of the side effects of the meds is insomnia, and Donovan has it in spades. Sleeping pills are not working...so they are going to try to find the right combo....let's pray it works!

There's also an area of one of the lower lobes of one of the lungs that isn't quite inflating properly, so the techs are getting Donovan to lay on that side and do his "slurpee machine" breathing exercise. As I understand it, he just needs to force air into that area. Let's pray it responds to treatment.

I'm not sure how things are going with the low blood, and lack of hemoglobin, but no news is good news for now. I think I've been told the white cell count is still decreasing which is great!
Best of all, for the first time in a month, Donovan got to breathe outside air. They loaded him into a wheelchair for a walk in the lovely autumn weather! I'm so happy for him!!!

Here on the homefront, things are busy, but I've had the privilege of sharing our miracle with so many wonderful supporters....Stephen's soccer team parents at a game today, and at a parent's meeting tonite. These folks have been great in assisting with our part in the planning of his team's trip to Charlottetown on Sunday. I've also had long leisurely lunches with family and friends and plan to go out again with the girls from my work on Thursday...the days are passing quickly. It's so odd, feeling like I've been away from home an eternity, but at the same time almost like I've never left at all. But I must say I'm loving my own bed, and all my familiar stuff!

Well, that's another day on our journey. Discharge is looking like it will be sooner rather than later, by the way they are handing the reigns over to Donovan. This is all still so continually amazing, and we constantly thank God for all his wonderful works in our's and our son's life.

God bless each one of you as you walk this road with us.

love,

Beth

Greetings from Prince Albert!

2008-09-28T23:58:00.002-06:00

It's just Beth here, not the whole family. Well, I do have my youngest Stephen, now within a hug's reach. It was decided quite suddenly this morning that I would come back home to be with our youngest before he leaves for soccer nationals in Charlottetown next week. Then I'll head back to Edmonton while he is gone. After that, I think depending on how Donovan is doing, Laurier & I will take turns staying in Edmonton. Folks, this is a time when clones are needed, quite badly. One of me to be here, with Stephen, and one in Edmonton with Donovan!

While it was difficult for me to leave today, I am encouraged by the way Donovan is getting around on four wheels, taking the long way around the unit with the walker! Logan came to visit his buddy again today...thanks Logan! (And sorry Sharon for the way I slaughtered your name...I was thinking of someone else who spells their name that way, not you! )

So this week is all about teaching, and learning. We have so much to learn about the care of second-hand-lungs! There's the anti-rejection drugs, testing blood sugar and administering insulin shots, and of course, our old favorite from cf days, pulmonary function tests, which we now get to do at home...but we have to buy our own machine for it. I hope Laurier takes a lot of notes.

I'm sure Laurier will get to go to the gym downstairs with Donovan as well this week. He (donny) has a lot of muscle strength to rebuild. Do you know when your body is under extreme stress as Donovan's was pre-transplant, it actually devours muscles. So that explains the trembly legs and arms.

So, sorry I didn't get to say goodbye to Kristen & Connie & Lauren and Shauna....but I hope to see you next week, preferably in the ICU both recovering from transplant surgery!!! I'm praying...you'll let me know, right?

My daughter Amy was kind enough to drive me home today, and turns around tomorrow morning to head back to Battleford for work. Isn't she sweet? I'll probably fly back there next Sunday evening.

Hope you all have a good night. God Bless each of you. I'm going to tuck my 14 yr. old "baby" in now, something I haven't been there to do in a looooong time.

love,
Beth

Step by step

2008-09-27T13:33:00.002-06:00

With a much less high-tech walker....physio today suggested one lap with the 'zombie walker' then another with a regular four-wheeled type! Now that's progress! And after that, for the first time in over 4 weeks, a shower!!! That must have felt fantastic for Donovan. No more sponge baths, and hair-washing ventures in bed.

There's also all kinds of wonderful rumors abounding here about passes from the hospital, and (get this) discharge in the future weeks. Now, all these different doctors have to get their collective heads together, and actually decide on when these things will happen...and then Laurier & I can actually make some plans about what we will do....but how good to know things are going this well! PTL!

We are going to have a very busy week with so much learning. We know very little about all the testing required for blood sugar & insulin, nothing about the anti-rejection drugs, and we've still not had a pulmonary function test....something we will do daily at home to check on Donovan's lungs each day. These tests will tell us if his body is rejecting the lungs (he's never been rebellious...let's hope it won't start now!). This week he will begin physio at the gym downstairs as well. We'll meet lots of other transplant folks there as well, which will be good for Donovan.

A busy afternoon for Donovan today....one more unit of blood, which means vitals checks very often for the 3 hours the transfusion takes. Let's pray this is the last. Also, one of the docs this a.m. didn't think antibiotics would stop so soon. I hope they make up their minds, because this affects the fluid restriction. This particular doctor really needs to learn to smile & lighten up a little! He scares me!!!

Well, I'm in the family room, and going to dig into my new book while Donovan sleeps. Actually it's your book Logan L.(I'll get it back to you on your next visit) "The Shack" by William Young. Check it out! Very interesting.

Take care everyone, and Happy 2 Week Transplant Anniversay Donovan!

Love,
Beth

Moving day again!!!

2008-09-26T22:05:00.002-06:00

In the grand scheme of things, it's a minor annoyance, but when you're the one going through it, it's major. Yes, we had a private room for 24 hours, then another patient needed isolation, so it's shared digs once again. How frustrating. This has Donovan at his wit's end! The transplant ward is quite small, and has only about 4 private rooms, so they are at a premium. He is on the list for one, but it remains to be seen when that will happen. How about we turn this over to God? He knows all of our needs, and knows what Donovan needs.

Ok, now for good news. Twice around the ward with the "Zombie Walker"....two laps in one session. That's twice as good as yesterday!!! He's fighting for all he's worth, and we couldn't be more proud. It is exhausting though, and Donovan is not gaining strength at the rate he wants to. He's more than a little frustrated with his baby Bambi legs, so needs all the encouragement we can give him.

It was wonderful for Donovan to have a surprise visit from his very good friend Logan today, and Logan's sister Sherren. It was great for all of us to see you Logan! Fresh from European travels, and more recently from school in Winnipeg. It's friends like you that are helping Donovan pull through this major event in his life, and we are so grateful for your loyalty! Bless you! Sherren, we appreciate your prayers and support as well. Wonderful to meet you!

Of concern today is Donovan's need once again for more "transmission fluid" aka blood. He received another unit today, and will get one tomorrow as well. From what we understand, his bone marrow just isn't producing the red cells he needs. Not sure why, but God knows. Let's bring this need to Him, and ask for plenty of red cells!

Amy & Tyler are here for the weekend, and Katie (and the world's cutest unborn grandbaby) as well as her husband Kurtis were also around today. Nothing like family, but we miss you Stephen!!! So much!!! Katie and Amy helped Donovan was his hair in bed today, quite a feat involving plastic garbage bag funnels and a tray...I wonder if they'll demand the favor returned one day?

A little more good news...there is talk of an end in site for IV antibiotics. Do you know we are into our fifth week of them? What a haul. But as we understand it, the transplant infectious diseases specialists (there's a mouthful) are talking about discontinuing them about 2 weeks post-transplant which will be tomorrow. This will mean Donovan can drink more liquids, as he will get less through IV. Yay!!! His white cell count was down to 14 today, and we can all celebrate that. If we can go down to 11, we'll be within normal range....

Yes, this has been quite a life-changing process, and yes, we are all tired. But these small gains buoy us on. Dr. Ghorpade (the surgeon) has even suggested to Donovan that perhaps next week he'll be able to get an afternoon pass from hospital. If you hear whooping and hollering from Edmonton, that will be us! (me, anyway.)

Love & Prayers to all,

Beth

He's arrived!!!

2008-09-25T19:51:00.002-06:00

Donovan has made the one floor journey up to the family room....to update his facebook page! Yay!!! Of course that means he's doing better...and don't we all love to see & hear that! Thank you God!!! And to all of our prayer warriors...another big hug!

I have to make mention of another good thing, and that is Donovan's enormous appetite. It's probably drug induced, but we'll take what we can get. He's got over 2 weeks of not eating to make up for, so this is a welcome side-effect. Note to visitors: He'll eat pretty much anything that isn't tied down....so watch your possessions. One "bummer" is that he has to maintain a low-sugar diabetic diet for now, so we can't buy him all the treats we'd like to. That's ok, though, as Donovan never was a 'sweets tooth' kind of guy, unlike someone else in the family.....(guilty as charged)!

Another good news report...twice around the unit today....50 meters or so with the help of the "zombie walker" once in the a.m. and again later. He is really determined to strengthen up, and occupational therapy showed up to assist with this with small hand-weights today. Look out, Arnold!!!

And one more praise item...(you're not getting tired of this are you?) We got moved to a private room today....Hooray!!! this was no small feat, as single rooms are hard to come by. We hope this will provide Donovan with a better night's sleep, and allow us to visit more freely. It's just the icing on the cake. Hope we won't have to move rooms again till we're gone for good!

Hey Chantal....thanks so much for all the encouraging notes. Donovan is finally up to opening all of them, and thankyou Annette for the lovely carved letter opener...it's coming in really handy.

And thanks to all of you for your love and support! Today is a really good day!

Love, Beth & family.

ps. Donovan who is right here in the flesh beside me sends all his love and thanks!

Lazarus....

2008-09-24T22:38:00.002-06:00

That's my friend Verla's new name for Donovan. His comment? "It works!" (Lazarus was the biblical character Jesus raised from the dead.)

I was thinking about that today as physio assisted Donovan on his very first walking venture! They use a giant walker which Donovan has dubbed "the zombie walker" It has an adjustable padded arm bench and handles to grip onto, as well as a harness underneath in case your legs give out. I follow behind with a wheelchair for him to sit in as he needs breaks. Today, the virgin voyage out of his room, he went down a hall, across the bottom of the hall, and up about 3 room lengths on the other side! Wow! Needless to say he was all a-tremble when we finished. But we were able also go on a "just for kicks" wheelchair ride and show him around a little after the walk.

Donovan was very tired today....the schedule is very tight as I mentioned earlier, so we need to continue to pray for restful sleeps. Today as I was helping him remove adhesive remains of bandages from his body, I felt the air under the skin in his chest. The weirdest thing...feels like rice krispies snap, crackle, popping....so Jerry S., tell me about this! You are the expert in all things respiratory! I know, it will probably go away....

I know you may be getting tired of this, but here's my worry list for tonite....(and I know I shouldn't worry!).
---continuing hi-ish white blood count, and we don't know why....it runs about 15-20
---swelling in legs is more tonite, even with diminished liquids....I know I shouldn't worry about this!
---Lungs are a little crackly, but I guess mine would be too if they were "new to me"
---Blood sugar readings are "all over the map" but this I'm told will settle.
---They (the docs) are puzzled as to why he needed blood yesterday...they are checking for sources of internal bleeding...but of course nothing is obvious.

Now, having laid that all out, I feel better and will pray and not worry. You will too, right?

I have to share with all of you how touched Donovan is by your thoughts, prayers and support. Each night we pray together before we leave him. Each time we do, he begins to thank God for everyone who is thinking of him and praying for him, and the tears begin, his first, then mine. He is humbled, grateful and his heart is overflowing. So, thank-you from Donovan!

For those who are coming soon to see him, he is still new-born kitten weak, and unable to be very animated. Emotions take a lot of energy to express, but he feels things deeply. Visiting takes a lot of work, but he enjoys just being "sat with" and will love to see you for short periods!

Good nite and God bless from all of us in Edmonton.
love, Beth

Good news (from the family room)

2008-09-24T13:12:00.000-06:00

Tucked away on the fourth floor of UAH (university of AB hospital) is a cozy little room with nice furniture, a huge tropical fish tank and 3 computers for public use. My little safe haven from all things medical. So it's here I sit while Donovan tries his best to get in a little snooze before the onslaught of physio. (onslaught? sounds more gruesome than it actually is....they mostly do strengthening and balance exercises!)

How about a little lunch-time good news? The last of the chest tubes came out today! Yay! So, we're down to one, count 'em, one, IV pump. That's down from at least seven in the ICU. We now need to ask God to keep the new lungs nicely inflated and working at top capacity. The four holes from the chest tubes are stitched up, but need to heal.

A concern of recent is Donovan's fluid restriction. The doctors are very vigilant about keeping the new lungs "dry" not overloading them with too much fluid in his system. Because he gets many IV meds and tube feeds at night, and needs to swallow so many pills throughout the day, they must keep what he drinks in a 24-hr period down to abuot 1 litre. That is not a lot! I've never really kept track of what I drink, but this restriction plays games with the head, and makes me thirsty for him! Let's pray this restriction is lifted soon. At this time, 1:30 pm, he only has about 11/2 cups left to drink till tomorrow morning! It goes all too quickly. He's still swollen in the feet and legs, but that is decreasing.

There is talk of decreasing the tube feeding that he has had nightly for about 7 years or more. Donovan used to need over 3,000 calories a day to keep strong for breathing, fighting infection and gaining weight. Guess what! Without a couple of faulty lungs, he may no longer need nightly tube feeds. Eventually, we may be able to remove his G-tube entirely! I hadn't even thought about that til now!

Strength is being gained daily, but Donovan still isn't walking on his own. This is something we'll work on at the gym downstairs now that the last chest tube is out. It's hard to support the upper body with a "shark bite" in your chest. The staples will stay in another week and a half or so, so we've got a ways to go.

Thankful for every inch we gain on this journey,

Beth

Transmission Fluid...

2008-09-23T22:47:00.000-06:00

They are adding a couple of pints to Donovan, as he measured "low" this evening.... I'm talking about blood of course, but isn't it really just transmission fluid? That should pink up his cheeks a little, (the ones on his face, people!) I wonder how many units he's received already? There were four that I knew of in ICU, and probably a few during surgery. So to my sister Jewel and all you other regular blood donors, a big round of applause and thanks! Make that a standing ovation!!!

We had a good day with Donovan. He was up and at 'em, giving himself a wash up on the side of the bed when we got there....did I mention he says sponge baths by young nurses are "over-rated!" He doesn't think all the personal attention is worth the trouble of getting "new breathers".

Found out he did have a pneumothorax, or partial collapse of one of the new lungs. It's better already, so I couldn't even spend time worrying about it! Darn!!! So the 15 litres of oxygen I spoke of yesterday worked their magic, I guess. There's talk of the last chest tube coming out tomorrow, and we will personally supervise the tight stitches, so no more leaks in his chest!

On the "praise" side of things for today, thanks for that dice game, Joan & Roger & Julie...we played it with Donovan & Katie today. Lots of fun! And what a joy to do something all together, something so normal...having a few laughs is as good a therapy as the stuff they run into Donovan's veins, (in my non-medical opinion).

Hey, more good news, his white count is down a little. Let's keep praying all the way to normal. I'll give you till the weekend, so get on it!!!

And how do y'all like the new looks of this blogsite. That would be the handiwork of my darling husband, who just couldn't stand not renovating something! He was appalled at the feminine template I had originally chosen, and didn't want Donovan offended when he eventually looks at this....and hopefully adds his own opinion. Is this more gender neutral? Or even a little masculine? I'm not sure.

We're still considering our options for long-term here in Edmonton. No decisions yet, but I'm thinking we may stay here at my friend Verla's house. It really is getting to be home, and I think I'd be too lonely in a new space. I'll just have to suck up my fears of Edmonton traffic! But there's time for all those decisions. Have I mentioned we may be here till Christmas or beyond? So far, we're on a pretty great curve, healing-wise, but we're told to be prepared for anything. There are always hurdles, but we'll let God deal with that....and He's doing a great job of getting us through thus far!

For those of you who have visited and seen all the post-surgical patients walking around hugging those red plush heart pillows on Donovan's ward, he now owns two of them! (One for each lung?). I was getting a kick out of watching these bent-over people pushing IV poles, walking gingerly up and down the halls, holding these heart pillows. They looked like victims of broken romances (hearts?) Apparently Telus supplies these pillows to the heart surgery ward, because it helps to hold a pillow to the surgical site for support. Donovan call them his "coughing pillows". He's doing well, but it does hurt to cough.

Please do remember to pray for "K" and "L" two fabulous young women, each waiting here for a set of lungs! They so deserve them! Each has been through a lot. It's hard for me not to feel guilty that we jumped through the hoops so fast, although we didn't have any wait time left to speak of. Each of these gals has been on 'the list' for months. Waiting in hospital seems endless.

Indeed, we are blessed and highly favored. Each time I tell our story both to medical people and friends, I come to realize it more and more. Just as it is going to take time for Donovan's healing to be complete, the realization of our miracle will take time to fully hit home.

Well, off to bed with me. Thanks for listening everyone!

love, Beth

Oh, Monday, Monday....

2008-09-22T22:17:00.001-06:00

The first day of fall...who would have ever thought we'd be spending the start of this season in Edmonton...but here we are. I think I will ask God if we could start the next season happily at home in P.A.

We had a wonderful nurse today, "Gitelle" so extremely efficient. And physio did show up as promised, so it was out of bed a few times for Donovan. Those legs and feet really need strengthening, but we have noticed small improvements in balance already. Soon he'll really be assisting with transfers to the chair. And we hope to get those wheelchair rides in, just for fun, soon, instead of a means of transport to x-ray etc.

We do have a few prayer needs tonite....The chest tube removal is still giving us troubles...it was suggested tonite that Donovan go on a large amount of oxygen (15 litres) by mask and rebreather bag to help deal with the re-absorbtion of air/fluid as we understand it. Laurier and I had stepped out of the hospital when this suggestion was made, so we didn't get our questions answered, and this bugs us both. Plus I just hate the sight of oxygen masks. I know, it's not a respirator tube, so I should just "suck it up", but somehow it seems like a step backwards. His oxygen sats (level of oxygen in the blood) are fine on room air, so the new lungs continue to thrive, but this is just a precaution, or to help, or something....

Also, Donovan's white blood count is way up, which suggests infection, although there is no obvious infection. No fever. Lungs are clear! They are checking his urine, as he was catheterized for an extended period...but no signs of infections there either. Another blip on the radar screen, I guess! He is getting a veritable truckload of antibiotics, so it should cover any bug. But please ask God to continue his wonderful healing work tonite, and to wipe out any infection....thanks guys!

We checked out a suite closer to the hospital today, new and furnished, though very expensive. ($1500-2000/mo.) We are thinking about what would be best for Donny when he comes out of hospital. He will have to continue to go in for daily checks, clinics and physio, for a couple of months, so close would be good! It would be great to not have to deal with the very crowded and at times slow parkade.

A few more good signs today...Donovan checking out TV listings, instead of vacantly watching the screen, and talk of being bored! Time to start puzzles, board games, etc. But I know how he feels, I'm getting a little restless myself! Saw a yoga class today in the activity room of the apartment we looked at and just about crashed it! Will have to check in to an exercise class here. Elizabeth, how's things at Bravo??? I miss you and the gym so much!!!

And as for my "wedding crasher" family, I can't wait to get the video and see who truly made fools of themselves...cough, Gregor, cough....saw the preliminary pics of people getting "corsaged"...but where's the good stuff, Lennie??? The spun gold dress? How we would have liked to have been there, next time Jason??? oh, get a grip, just kidding!!!

Well, off to bed. And hopefully on to another day of healing and better news tomorrow....

love & prayers,

Beth

ps. Dennis & Paulette, thank you for the wonderful card & gift. How nice to meet Nicole, and so sweet of her to deliver it to us. She's wonderful! Hope you are both well, and maybe we'll get to see you here as well!

The trouble with chest tubes is....

2008-09-21T21:16:00.000-06:00

When you remove them, they leave holes in your chest. That is, if you have very little fat on your chest, as is the case with our lean boy! The good news is 2 more came out today. The not so good news is, the holes didn't close properly, so with each breath, Donovan was literally moving outside air into his chest cavity. And the scary thing is, he was the one who "picked up" on it. So, x-ray, stitches, and lying on his right side were all supposed to move the air to the other side where the remaining chest tube would vacuum it out. Hmmm, yeah, right! Didn't happen. This evening, we found out that there was still a small amount of air leaking in from the bigger of the two holes. So now we are trying a pressure bandage and the side-lying position.

So, that can be #1 on our prayer list today, that all the air moves out, or there will have to be a new tube inserted. Ouch!!! Not fun!!! And please ask God to remove worry & anxiety from Donovan's mind. He needs peace to heal. Can you imaging holes in your chest??? might make me a tad anxious!

Donovan lost his catheter today, and made one commode-chair trip to the john! We're celebrating sitting on the toilet like we did when he was a toddler. I should have had some M&M treats for him. Yay!!! So, fewer and fewer tubes remain. He is reclaiming his body bit by bit. He's talking more, and eating a regular diet now. We can even sneak in outside treats! It is fantastic to see the return of the appetite! He will need to gain some lost weight, but we don't know how much. He's retaining fluid right now, so actually is about 10 lbs or so heavier than pre-surgery.

Today Donovan's wonderful surgeon, (remember "Dr. I love you" from an earlier post?) aka Dr. Ghorpade, was kind enough to show us photos taken during the transplant surgery. We saw Donovan's old lungs, all misshapen and discolored, scarred, bumpy, and totally used up. Then, there was a picture of these beautiful, pink, firm lungs inside the opening to his chest. How wonderful. And no, they didn't make me feel squeamish at all. I was transfixed by the wonder of it! How does he do it? I have no idea, but I am thankful science has improved to this point. We owe each new breath Donovan takes to this doctor and hospital.

Well, it was a teary goodbye to Amy and Stephen this afternoon, who head back to Battleford and PA, but we know we'll all be together again soon. There is talk of a visit with cousins next weekend as well. Laurier & I ventured out to a mall today to pick up new PJs for Donny, and there's talk of new slippers, because after sitting in a chair comes walking!!! Those old swollen feet will be gone in a flash! (his, not mine!).

And hey, family, I want wedding reports and soon. Photos too! What did the bridal party wear? Did Jason stumble on his vows? (the "till death" part?) How was the meal and dance??? Don't spare the details....

This week we can expect the physio people to be on Donovan's case constantly, no rest for the wicked. How exciting it will be to get him in a wheelchair and actually show him where he's been living the past two weeks!

A special thanks today to Vince & Anne Hill, your gesture of support was very touching. We miss you guys...keep a pew warm for us. And when does the class start Anne?

To Hagels and Friesens for getting Stephen to Battleford and back....wow, thanks sooooo much. You're awesome. We miss our 'baby' so much! It was great to have him here this weekend.

To all of you who continue to hang in there with us, it means the world. Each prayer and gesture is felt and appreciated. All of you are number 1 on our "praise list".

In the grip of God's grace,
Beth

ps. Could I be so bold as to ask you to pray for a fellow named Tom, who was in a near-fatal motorcycle accident? We met this lovely family in our first ICU unit, and continue to run into them all over the hospital. Incidentally, Alice, this is Danica's mom's first cousin. She also knows the Draders (our son in law's family) from church. Small world. He is making strides, but it will be a long haul for him and his family.

28 Staples....

2008-09-20T22:03:00.000-06:00

Counted 'em today. Armpit to armpit, spaced 1/2" or so apart. They are holding the big "clamshell" incision together, as it's officially called. We prefer "sharkbite" it's more exciting and dangerous. He'll have one impressive scar, that's for sure. Should be good for impressing the opposite sex on the beach!!! The staples will come out next week.

So, as my friend Jan said, we (I mean Donovan) is now in the Bridal Suite, a private room. How fantastic to have all my kids able to spend time freely with Donovan, no one "on the clock" counting our visiting minutes, and not limiting us to 2 at a time. Having said all that, part of our visit is spent whispering quietly while he sleeps.

Donovan is sitting up for short periods of time now, some of it in a chair, and some on the side of the bed. Woo-hoo! He stands with help, but the legs are definitely that of the newborn"bambi" variety. It will come.

So tonite, we still need to ask for prayers for a good, deep sleep...preferably without vivid and/or scary dreams for our son. He also would like to lose the "Kankles" or calves that lead into big,swollen feet. He's got about 10 pounds of fluid on him. He is also having some blood pressure issues, due to the antirejection drugs, and blood sugar that is all over the map. The continuous insulin drip is being exchanged for shots, and this should help with regulation. of the blood sugar. He's also complaining about bad, bad heartburn...is he mistaking this for incision pain? Not sure, but same location. So...a few things that God can help us "tweak" although He's been so gracious already.

On the blessing side...coughing is coming easier, we've seen a few smiles, and he's definitely living in the here and now! And no complaints of pain with any pokes, prods or procedures. Thank you God! We've bought him a P.S.P. (one of those portable playstation thingies) and he has shown some interest in that. His Ipod has been listened to .... he's coming back to his old techno self....

Blessings abound with all the visits, encouragement and prayers of friends. We love you all, and thank God daily that we are not journeying alone...

I was able to hear most of my poetry on CBC today...I think I missed the first poem only. Yes, kleenex required. Sorry about that, folks, but writing is my therapy. Keeps me out of a rubber room.

Off to do something normal for a change...watch a movie with my kids!

love, Beth

Info on how to listen to my Donovan Poems....

2008-09-20T09:21:00.000-06:00

Hello Everyone,

For those of you who were asking, Laurier found a way to listen online to CBC radio....if you are out of Sask. I hope this works. I have no idea where in the hour-long program my poems will be aired. Anyway, I hope this works for you!

CBC RADIO ONE Program Guide

SoundXchange is heard Saturdays from 5 p.m. to 6 p.m. on CBC Radio One (102.5 AM in Regina, 94.1 FM and 540 AM throughout Saskatchewan). A live stream of the program can also be heard on the Internet during the Radio One broadcast.

http://www.cbc.ca/listen/streams/r1_regina.html

Coming Up on SoundXchange: September 20: From the (stylish) heart…

Juno nominee Elizabeth Shepherd and Trio played at the Saskatchewan Jazz Festival in June.

Plus Beth Gobeil brings us another stunning set of poems from the world of parenting a critically ill young man...Grad Song for Donovan.

Click on link below to listen online.
http://www.cbc.ca/listen/streams/r1_regina.html

We are off to the hospital with the family today (again), hoping to find Donovan got some sleep. Update to follow later. Happy wedding Day Jason & Jessica. Wish we were there in Yorkton with you! Love you,

Beth & Laurier

Moving right along....

2008-09-19T00:00:00.001-06:00

Out of the ICU we go....on Day 6 post transplant! Let's just put in perspective how remarkable this is, then pass all the glory on to God. As I mentioned in an earlier post, if you were "healthy" yet needing new lungs, were in the community waiting for a phonecall that lungs had come in, you could expect to be out of ICU in a week or so. Let us remember Donovan was transplanted from life support....not in any way ideal condition for surgery. But down the hall we went on day 6, first to a double room, then to the much-awaited private room. Hooray! no more "calling in" before we visit, only to be put off multiple times....

Donovan also had the "necklace" or central line in his neck removed, which makes him feel and appear much more normal.

To round out our wonderful day, Amy and Stephen joined us for the weekend! How fabulous to have the whole family living, laughing and loving together. I just want to keep them all in hug's reach forever, but I'll settle for the time we have together now. We had a lovely stroll down Whyte ave. today, in the beautiful autumn weather with golden leaves falling gently and crunching underfoot! One day, in the not too far future we'll have Donovan with us for an outing! Can't wait!

Ok, let's get to our prayer needs...Donovan's number one priority is meticulous care of these brand new "breathers".... he needs to use what we have dubbed his "slurpee machine" on the hour to keep coughing and keep pneumonia away. It one of those breathing aparatuses that makes you cough. It's tiring and painful. Let's pray it gets easier.

I had enough nerve to ask his doc today if it was too much to expect to be out of hospital all together in another couple of weeks. He replied that it would be "pushing it." But hey, we're out of ICU on day 6....so anything's possible! Let's pray it into being! Sleep for Donovan is stil a prayer need. Last nite he was plagued by nightmares, even with a sleeping pill. Let's pray against any bad dreams, and hope as well that being out of the constant stimulation of the ICU will help to this end.

Let's praise God for unimagineable goodness and grace! Donovan is much less anxious and worried today. He's happy and mellow. His siblings are thrilled to have their brother back. We just feel so blessed! No rejection or signs of infection thus far....

Ps. 23 keeps floating through my mind..."The Lord is my shepherd, I shall not want....He restores my soul.....surely goodness and mercy shall follow me all the days of my life...."

Rejoicing to be one of the Flock,

Beth

ps. For any of you that live in Sask, and are poetry fans, I have a suite of poems to be aired on CBC radio tomorrow at 5pm on the show Sound Xchange. The timing of this airing is very ironic indeed, as these poems all relate to Donovan, and come from our experience last fall when we first started talking transplant. If you get the chance, give a listen and let me know what you think. They are to be read by an actress and set to music. I think there are 6 poems in all.

We're slowly become less "high maintenance"

2008-09-19T00:00:00.000-06:00

The tubes are coming out! Well, one did anyway...3 chest tubes to go! And the epidural pain control is history as well! But don't worry, Donovan says the pain is not too bad.

There's also a big cental line into a vessel in Donovan's neck (I call it his necklace), that will be changed to a "Pik-line" in his arm soon, maybe tomorrow, which incidentally may be moving day for Donovan...out of ICU! Yay!

So, the physical healing is definitely on track, but we need some prayers tonite for all the emotional healing. As we all know, recovery from surgery always has peaks and valleys, and today was kind of a valley day. Some of the drugs in use are known for mental confusion and anxiety, and that double-edged sword was being felt today. Much reassurance was needed, as well as re-orienting to time and place. We finally made a calendar for Donovan, so he could see the timeline of his journey through the health system. I hope it will help. Donovan didn't sleep a wink last night, so this made today extra-hard. Let's all pray that today was his last in the 24-hr. marathon of the ICU.

Blessings today include praying with our son, hearing his voice thank God for his new lungs and pray for the donor family. We also felt God's peace descend on us in that little room, and, incidentally found out that his nurse today, a young fellow, was also a believer. He shared some stories of his mission trip to Africa. God is so good!

Katie was able to come this afternoon bearing ultrasound photos of "uncle Donny's" soon-to-be little niece or nephew! what a boost!
Chocolate pudding made its way into today's ever-expanding menu, as well as a cream soup. That put a smile on our son's face!

Well, it's once again way past bedtime. Thank you for all the wonderful emails and comments. You are all very special to us!

till next time.....Beth

"So you guys just decided I should get a transplant?"

2008-09-17T22:48:00.000-06:00

....He's baaaaack! And that is how our first morning conversation began, with Donovan beginning to be more oriented to the here and now, his voice 50% stronger than yesterday.

For those of you who were following the mass emails before this blog, you may remember our journey started Aug 31, with a hospital stay in S'toon, and Donovan being air-ambulanced here on Sept 8. Sept 3, Donovan experienced a massive lung hemmorage, and that is about his last memory, as that led to his being sedated and put on the respirator. As we gently reminded him again today that he was now in Edmonton, and had been here about 9 days, he wondered if we just decided, randomly, that it was time for the transplant. Gulp! What a huge bite of his reality that was for us. We are informing him little by little of the events that led up to our double-lung miracle, but he was still in the place today of wondering what led to his lung bleed of Sept 2. The puzzle pieces will fall into place as he heals. Donovan was also a little ticked today because physio didn't show up when they said they would, and "don't they know how important chest physio is when you have CF?" We were overjoyed to tell him that his "daily beatings" ie. chest percussion and drainage were gone with his old beat-up lungs....forever!!! Yay!!! He does, however, have to do new breathing exercises, and start strengthening all of his bed-ridden muscles!!!

But honestly, "Taste and see that the Lord is good." Today was another good day...are you getting tired of hearing that? I hope not, because we are told to be cautiously optimistic, and so here is where I will vent the good stuff! How about this for openers....today was day one of a liquid diet! Juice! Jell-o! A little trouble swallowing water, but that will come. And that hand-mouth coordination is coming right along....C'mon, how many of you can get a spoon of jello to jiggle right to your mouth every time? Huh? And, are you ready for this, Donovan was told to take off his oxygen tubing...too much oxygen in his blood, upon the hourly blood gas test! Is God extravagantly good to us? C'mon, Donovan, too much oxygen? Are those new lungs bragging???Donovan commented to a doctor today, "what's happened to my dexterity?" Ok, a 4-syllable word on day 3 post-surgery? I think his noggin is doing just fine...and he was informed that the neuro-muscular block they injected him with to help with ventilation will take a while to wear off....

The days are busy in the ICU, with someone bugging the patient about every 5 minutes, IV bags to hang, physio, personal care, blood tests, all the bells and whistles to check, on and on it goes. Rest time is at a premium. The nurses are wonderful, but often stressed and tired. On our prayer list tonite is patience for us, Donovan and the ICU staff. And of course praise for his continued healing...boy, would we like to be out of ICU, but we'll wait it out....

Thanks to the Hagel's for driving Stephen to Amy to come and see us on Friday, and to Bev E. for coming to see us today from Ft. Sask. What a wonderful distraction, those adorable kids. The only problem with today's visit is it really makes me miss preschool! (And you, Laurie!)

And to all who have left wonderful, encouraging comments...thank you so much to every one of you! I am way too low-tech to know how to reply to you on this blog, but if you post your email addresses (if I don't have them) I will try to comment back, if time permits. But know that I read and love the comments. I miss so many of you!!! I want to go home!!!

So tomorrow I am to bring a mirror to the hospital so Donovan can see his "shark-bite" incision, and also his Ipod. Time to get back in touch with the world his Rip-Van-Winkled from a couple weeks ago. Should be a good day!

To my family, know that I am missing being a part of Jason & Jessica's wedding plans, but my heart is with you!

Love & prayers,

Beth

Day 3 "I have used lungs" or Houston, we have attitude!!!

2008-09-16T21:12:00.000-06:00

Those precious words were some of the first that Donovan quietly articulated once the tube was out and a whisper of a voice returned to him. Wanting to see "where he was at" mentally, I reminded him he was in the ICU and his double lung transplant had occurred. "Donovan, can you say I have brand new lungs?" "I have used lungs" he informed me!!! What a guy!!!

He is weak, tired, oh, so very tired, but he is breathing on his own, with only a little extra oxygen via nasal cannula (tubing to his nose). We continue to be overjoyed, but not without a few anxieties. He tends to set off alarms when he drifts in and out of sleep, which is about every 10 minutes, and has episodes of apnea, or stopping breathing. Some kind reassurances of the staff helped to allay our fears of re-intubation, but it could happen. We are to expect hurdles and bumps, but let's continue to pray for healing and strength and steps in the right direction. How wonderful to see the respirator tube out, and a male nurse today shaved his facial hair into a nice goatee!!! He looks great!

Do you remember that old TV sitcom "Malcolm in the Middle"? Well, the way Donovan is speaking sound an awful lot like the character Steve, the black kid who was in a wheelchair with some kind of breathing issue that made him speak very, very slowly and breathlessly...that's Donovan today. The back of his throat is very swollen and irritated from 2 weeks of intubation. It will be a few days till he can swallow properly and drink as well. Today was a rinse and spit day...

More from Donovan today: Mom: "There's dad Donovan, say hi to your dad." Donovan: "I can say hello myself!" Also, he has begun to cough, which is very difficult and probably painful, but necessary. He has a suction tube to help with removal of secretions from his mouth. His hand-eye coordination is not there yet, and the tube is hard for him to wield with shaky hands. Laurier noticed him making motions to his mouth with the tube and asked if he needed help. "no, just practicing," says Donny. Also, he told Katie the tube should be marked with as marker as to where he is to pick it up, so as not to put an eye out with it if he picks it up to low on the "hose" part...Katie solved this by wrapping a rubber glove around it...he thanked her and made her cry!!!

Best part of today, saying "I love you, son" and (finally) hearing "I love you too!!!" Need I say more?

Well, just this...."For I know the plans I have for you" declares the Lord, "Plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11

Praying for a future that glorifies God...and with continual gratitude for all of you on this journey....

Beth & Laurier

ps...there is a young lady we know of in hospital who also needs a pair of new lungs...please pray for "K." and have everyone you know sign those donor cards!!!

Day 2, "Is it tired in here, or is it just me?"

2008-09-15T21:37:00.000-06:00

Good Evening....I will try and get this post in between yawns and stretches...and give God all the glory for a fine day 2 with borrowed lungs....

Laurier and I are still finding ourselves on red alert for danger whenever we call into the ICU to see if we can visit Donovan and get put off for procedures etc. "what procedure, what are they doing, is he ok?" These paranoid thoughts tumble through....we are still so jangled inwardly, when of course, they are just changing a line, bathing him, doing checks, etc. etc. It will take awhile, having walked through a minefield of illness and real danger. I can sure relate to those returning soldiers.....

Now for the day's health report: 2 eyes open, count 'em, both looking and blinking with interest, just not at us. There's something on the ceiling that is really holding our boy's interest! I am a little jealous, but hear from those who've been through it, that delusions, halucinations and the like take precedent over the living for a while after such major trauma. It's a little freaky, but we're getting used to it. But one precious gift from today is a crooked semi-smile, just on the corner of his lips, beside the ventilator tube taped to his mouth, a smile I asked for, a smile I got!!!

Speaking of the vent, the oxygen concentration is now a mere 25% (you and I breathe 21%) so we're close...we went from controlled to assisted, then back to controlled support, but "it's all good". They inserted the aforementioned spinal anasthetic to assist with pain control, so thought they'd give him the vent support a little longer. We're told it'll be out tomorrow or the next day. We can surely wait, but to be honest, I'm really impatient for this. Do you know how long it's been since I've seen that boy's scruffy moustache? It's been all covered with tape and tubes...nearly 2 weeks, or is it more???

What else? We've got toe wiggling, shoulder scrunching, hand clenching, one-eyebrow raising (a Donny special), many facial expressions, my least favorite of which is eyeball-rolling....I'm told to hang in there, and when all the narcotics are finally flushed out, we'll get our Donovan back....

So good to see Dave & Linda today, who know so much of what transplant is all about, also Ali, Connie R., my food-pushing (just kidding), sisters, & of course Verla...thank you all for your support....

What a beautiful day this has been! Many more days ahead on this road, and although we do anticipate a few bumps and hurdles on our journey to breathing easy, we know that as you all walk alongside, those hurdles will be navigated, and the bumps smoothed away!

Finding joy in the journey,

Beth

ps. A few prayers needed for the unjangling of those upset nerves...I'd like to NOT have cardiac failure at every alarm, bell, beep & buzzer in the ICU, and of course for Donovan's detox process. Standard prayers for acceptance of the lungs and no infection still apply. Just pray as you feel led.

Praise God with me for every comment I've heard today that says, "He's doing so well!" from those "in the know," the medical folks. We are so very, very thankful for our miracle, every minute, in the midst of our fog & fatigue. And we include all of you as part of that miracle!

Day One....this is as good as it gets! "Dr. Weikauf"

2008-09-14T23:29:00.000-06:00

Ok, first off, everyone gets a hug! Everyone!!! Not wimpy noodle arms or a 3-back-pat man hug, but a big tight bear hug, with little animated red cartoon hearts floating all around as I'm hugging you.....That's the kind of day it's been (as Lloyd Robertson would say....)

I just found out you could comment on my blog, so I read your comments, aw shucks, are you ever niiiiiice.....thanks, people....

I bet you want some good news, don'tcha? Well, I won't keep you waiting. How about this for starters...Dr. Weikauf (post transplant care doc) said of Donovan's "Rockstar" nite (that's how a nurse described Donovan when I impatiently phoned the ICU for an update in the wee morning hours, she said, Donovan, he's a rockstar!!!) anyway, where was I? oh yes, Dr. W. said, "Day 1, this is a good as it gets!" Then he went on to describe several other less terrific scenarios that could have played out because of the very serious condition (and that's putting it in PG language) that Donny was in when he went into the OR.

So, today, it was wake-up time for Donovan. But it wasn't anything like, snap, ok, where am I? It was more one eyelid lifted a quarter of a mm., another eye, a 20 minute doze, repeat process while ecstatic parents repeated appeal to sleepy son to please, please, open your eyes, squeeze my fingers....wiggle your toes, earth to Donovan.....after several hours we did get both eyes simultaneously open, but only for a few seconds. The porch light was on, occupants were questionable, if you get my drift. We gently announced he was breathing with new lungs, and assured him repeatedly that he was in the best care possible and doing wonderfully. I recall the word "miracle" being tossed around like a baseball!!!

The main thing today was to make sure he was comfy, I think he was mostly, and to get him off the sedation. We accomplished that! That lots for day one!!! He has many painkilling drugs on board and tomorrow will get an epidural for pain control. Amazingly, this type of pain med that is used a lot for childbirth can in this case be isolated to a few inches on either side of his clam-shell incision, which goes horizontally across his chest from armpit to armpit.

As far as getting that breathing tube out...well, we are going to go at Donovan speed for that. His comfort level and "numbers" will let us know when he is ready to be extubated. The respirator today was on the lowest possible setting, but it was controlling Donovan, whereas tomorrow we want it to be only assisting, and then we hope to fire the thing shortly after and have Donny do the whole breathing thing on his own! Sound like a plan? We hope so....

Yes, I do get my hyper-ness out on this blog. But seriously, I spent a lot of time today trying to wrap my head around our situation...a lot of time I'm sure looking like I was the one on drugs....and I think I may feel like this for some time. So if any of you see me with a glazed-over post-traumatic stress disorder look on my face, aimlessly wandering the halls of U of A...well, that's just me....for a while anyway.....

On a side note...I have the world's most amazing husband, and yes, I now know for sure (I've always suspected) I'm darn lucky to be his wife. He has held up and held me up unbelievably through our roller-coaster....Of course he's also cased the whole hospital and made mental notes and verbal ones on how the whole joint could be better run, including improvements to personnel, machinery, useage of available space ...you have to truly know Laurier to appreciate this. What a guy!!!

Ok, now I'm just rambling. But I'd like to leave you with this ( a fave of my family, that's been in my head all day)... Psalm 103: 2-5 "Bless the Lord, O my soul and forget none of His benefits, who pardons all your iniquities, who heals all your diseases, who redeems your life from the pit, who crowns you with lovingkindness and compassion, who satisfies your life with good things, so your youth is renewed like the eagle's.

Soaring with Eagles.....Beth, Laurier & Donovan

ps...a few prayers to get off the respirator...can we do it troops? Thanks!

pps. So nice to see Chantal, Kaylee & Shenoa who drove in from S'toon. Thanks guys!!! (and mind that speed, Chantal). You are so loyal. Love ya!

Roger, Joan & Julie, you were the hands and feet of Jesus to us when we needed you most...you were there! We love you and will miss you. It's only 2 hrs away, Julie!!!

And to my sisters, Jewel & Ghislaine...what can I say....thanks to West Jet for getting you here...and to you for feeding me and getting me through. I love you

till tomorrow,
Beth

New lungs, new life....thank you our wonderful God

2008-09-13T22:13:00.000-06:00

10:13 pm

"Behold, I make all things new"

What a day, I keep thinking I'll wake up and this will have been some kind of dream....but it isn't!

The surgery went without a hitch. Out with the old, in with the new! I love Dr. Ghorpade! He doesn't know it, but I am officially his biggest fan!!! Thank you for saving my son!!!

At about 5:30 pm, after having been put off twice, we were permitted to see our dear son, and see the rise and fall, rise and fall of his chest, normal breathing.... a miracle. I have never in my life witnessed such silent beauty. Donovan is breathing with a ventilator, but it is very slow and quiet. No whirr of a loud respirator forcing abnormal amounts of oxygen into reluctant dying lung tissue...just a soft whisper of air.

We stayed with him and rejoiced at God's gift of goodness, his mercy to us, and then left the wonderful medical team care for him. We are so tired, beyond exhausted. There is the outside chance they will take him off the respirator tomorrow, and that would be truly wonderful, but we will accept small, baby steps in the healing direction.

Donovan will get a spinal block for pain tomorrow, and although we look so forward to seeing his beautiful dark brown eyes open, we know it will be a lot for him to take in. Can you imagine waking, having the past 2 weeks lost to you, finding you've almost died and now have had major life saving surgery???

Please stand in prayer with us against our two new enemies...infection and rejection. The immune-lowering anti-rejection drugs that Donovan will take the rest of his life have begun! Pray for a gentle easing into reality for Donny, and for control of pain.

Stand in praise with us at timing for this that was orchestrated by the hand of God for His purpose and glory...."His thoughts are not our thoughts, His ways are not our ways..."

Thank-you to you, our wonderful transplant journey family. You are all fabulous instruments of our Glorious God!!!

More from a clearer, more well-rested mind tomorrow......

love,
Beth

New Lungs

2008-09-13T17:24:00.001-06:00

Hi, this is Alison for the Gobeils. Right now Beth, Laurier, Laurier's brother, Katie and Kurtis should be going into the ICU to see Donovan after his successful lung transplant.

Thank God, thank God, thank God. We are celebrating!

The surgeon told us there were no times that he was worried during the procedure. The new lungs are working. Donovan is off of life support (the heart-lung machine) but still has the respirator. That should come out after he is awake in a few days. He may be awake as early as tomorrow.

As with any lung transplant, the next 24 hours are critical, so keep praying. But thank you for all your prayers today and throughout these weeks.

Everyone is very happy here.

5hrs into the surgery....

2008-09-13T13:33:00.000-06:00

" Delight yourself in the Lord, and He will give you the desires of your heart....."

We still feel a little like we are in the middle of made-for-TV movie special, you know, all melo-dramatic, bad actors, phony plotline etc...totally low-budget and unbelievable. "he's dying, no wait, dr's on the phone, they've located donor lungs, they're gonna do the surgery"!!!!

Except it's not a movie, and it is happening. Surgery started a 8:30 appox. It takes a long time to remove very sick CF lungs, and the transplant surgeon who also put him on the heart/lung bypass machine last nite did just that a few hours ago...then the new lungs...get this...from a 20 yr old male donor, made the scene. These are bright pink (I'm assuming ) un-sick, un-CF lungs. Custom made to order! Hallelujah!

Does it get any better.....why yes, it does. Donovan's double lung transplant in #386 for the hospital, but they have only transplanted from a heart-lung machine 4 times at this hospital. It is risky. But we are doing it, and will update you as we can.

Pray for continuing dr. wisdom, for healing, for no complicatons, for no rejection, for peace for us all....

Dancing in delight, (mostly)

Beth

new lungs today....??? we are hopeful....

2008-09-13T02:11:00.000-06:00

2:30 a.m. Sept 13/08

Dear friends,

Trust in the Lord with all your heart, lean not on your own understanding, in all your ways acknowledge him, and he will direct your path....prov 3: 5-6

This is an email I've been anticipating and dreading. As posted earlier, Donovan had a very rough day and was very unstable for most of it. Sats were running low, C02 high, a bad situation.

By late this evening, we were holding out little hope for his recovery, or to become stable in time for lungs. I've been feeling so sick with anxiety at the hospital, that this evening Laurier's brother Roger went with him as he had planned to help with evening physio. Things were bad on arrival. Discussions were held whether to begin life support, a machine to clean the blood, oxygenize it and return it to the body, since Donovan's lungs are failing so rapidly.

He came home with this devastating news, and we all fell apart with grief (especially me). Katie came in from her home in Leduc, and we contacted our other kids, trying to decide if they should join us, or wait it out at home.

One phonecall later, and there is talk of a possible donor being assessed. Laurier & Katie went back to the hospital, and the doctors explained as they were moving Donovan to the operating room, that coming in for a transplant from home has become routine surgery, transplanting from the ventilator is a little more serious, but they have done it in the past, but transplanting from a life support machine, is no longer routine or somewhat serious, it is major. Lots of risks....

The good news is, the lungs will arrive early in the a.m., and are a match for our Son. Praise God!!! There is a small chance these dr's may reject them, but it is slim.
The surgery is set to begin at 8-10 am and last at least 6 hours.

Ok praying people, on your knees, go!!!! Let us pray all day tomorrow for wisdom for these specialists, a night with no crisis for Donovan, and a fresh chance at the breath of life. Spread this around the world, we need it. This may be and probably is his very last chance for recovery....

My heart is in my throat, I feel I have been through every describable emotion, but the ride is not stopping here...there is tomorrow to think of.....

pray for peace for us as we wait here and Amy in Saskatoon, Stephen in Prince Albert. For Roger, Joan & Julie who are grieving and hoping with us tomorrow. For our mothers, and other relatives....we need peace and calmness.

For the surgeons as they do this very complicated, life-saving surgery, for God to supernaturally equip them . For an uncomplicated as possible surgery.

For strength for Donovan, peace in his heart, for healing and rest...good blood pressures, everything stable as it can be.

Pray as God leads you on this day of days.....it may be the best day yet for Donovan!

September 12,08

2008-09-12T16:40:00.000-06:00

Today is a tough day. Donovan "Decompensated"overnight,meaning he couldn't get enough oxygen in his blood. They had to do an emergency bronchoscopy,so now he is recuperating from that. He also will have another one today,to check the amount of secretions in his lungs. They feel that the sedation necessary for him to be on the respirator is not allowing him to clear his lungs. He may need daily "bronchs". The transplant doc is telling us to be hopeful for lungs, and that he is the number one priority for transplant in the hospital.

They may do a "trach" tube on Monday, as this is easier to access for airway clearance,and he may need it anyway after the transplant, till the new lungs "kick in". He also got a new line in his neck vein, as they couldn't put all the needed meds in his old port.

Donovan's neighbor and friend Alison Starks came to visit today. She goes to university here, so that was a welcome bright spot. Also, my friend Annette Stevens who I haven't seen for ages came to visit with her daughter on her way to Red Deer. These visits are welcome distractions and keep me sane!!!

Looking forward to seeing Joan & Roger & Julie, Laurier's brother & family this weekend.

Still feel like we are hanging on for dear life....our son's and our's. We know you are all praying and feel your support and prayers.

The serenity prayer comes to mind....God, give us the grace to accept what we can't change, courgae to change what we can, and the wisdom to know the difference.

Prayer list: Brand, spankin' new lungs (or slightly used,but still in good cond'n) as soon as possible!!!!
A much better night! No de-satting, (low oxygen levels)!!!
We now have a fungus to fight in addition to the usual bad-guy bacteria, so let's pray for the antibiotics to kick in full force!!!!
Strength to continue, minute by minute, hour by hour day by day....when the nerves are frazzled and all the news is bad.

Thank you/blessings....a great, convenient place to stay, my friend Verla's. A reduced rate parking pass, to offset enormous costs of "the big city"

support from our great medical team....and of course, all of you, friends & family, helping us feel we're not alone...

The blessings of a God who created the entire universe out of nothing, as well as every cell in Donovan's complicated body....That we know God personally, and that "He cares for us...."

Asking him to bless all of you.....

Beth & Laurier

September 10,'08 We're "on the list"

2008-09-10T15:32:00.000-06:00

Hello Everyone,

Today is a landmark day in our transplant journey! About 1pm today, the transplant coordinator came in to Donovan's ICU room to say we're on the list. While I wish this was a nationwide, worldwide list...it is not. It covers Sask., Alta, and northern BC. Quebec has its own territory, as does Ont, and mainland BC. etc. If one other territory does not need its organ, they will offer it to another region.....so the wait is on.

Today's news: I called last evening and Donovan was still stable. This morning he had no fever, and was afebrile all night! Good news! I was so anxious to see him open his eyes, but he seemed to sleep right through chest physio, coughs and all. We met with the social worker who works with lung transplant, and she gave us lots of homework to do....papers, papers, papers...

Donovan was "awake" for awhile after the coordinator gave us the thumbs up for listing...he tried so hard to communicate, and gestured he wanted to write to us many times, but as yet is too weak....you can only imagine how frustrating this is for all of us! But so good to see those lovely big brown peepers of his.

So we are excited, anxious, thankful, emotional.....a little scared, trusting God, our all in all to bring us through praising his name.....hope to get all of you on this list to follow along, and one day rejoice in the gift of life for Donovan!