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