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
Wednesday, January 28, 2009
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
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