...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
Sunday, December 28, 2008
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 ...
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