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
Monday, September 14, 2009
Saturday, March 14, 2009
Whew!!!
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
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
Thursday, March 12, 2009
Life on a Tightrope...
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
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
Thursday, February 26, 2009
Buds and Blossoms
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
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
Wednesday, February 11, 2009
In and Out!
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
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
Monday, February 2, 2009
Home is where you hang your heart...
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
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
Wednesday, January 28, 2009
Homeward Bound (don't jinx it, says Donovan)
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
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
Monday, January 26, 2009
Eighty-eight per cent!!!
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
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
Wednesday, January 21, 2009
Puppy Love!
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
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
Monday, January 12, 2009
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
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
Wednesday, January 7, 2009
"Ampho-Terrible"
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
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
Saturday, January 3, 2009
New Year, New life....
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
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
Sunday, December 28, 2008
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
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
Tuesday, December 23, 2008
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
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
Friday, December 19, 2008
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
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
Monday, December 15, 2008
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
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
Tuesday, December 9, 2008
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
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
Tuesday, December 2, 2008
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
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
Monday, December 1, 2008
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 ...
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 ...
Tuesday, November 25, 2008
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
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
Subscribe to:
Posts (Atom)