Only "The Shadow" knows...

...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

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

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

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...

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....

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

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

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...

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)

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!

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....

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.

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!

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...

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 -

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.....

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...

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?

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....

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

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...

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!

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

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...

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"

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!