Wednesday, September 30, 2009

Where to start?

After being diagnosed with the Cryptococcus on Friday, Will seemed to start to get better and then started getting worse again. Yesterday and today he has been really, really sleepy and his oxygen requirement is going up (we would expect it to go down with treatment of the infections). He's now on 5L by nasal cannula, which keeps him saturated in the mid 90s. That's about the best they can do with nasal cannula, if his oxygen requirement goes up any more it will be back to the mask or the high-flow machine.

None of the doctors really seem to have any idea why this is happening. In fact, they've been sort of arguing that Will's O2 requirement is stable or even, better, than it has been. This is so strange to me that they would look at one reading only and not what is a clear trend, but, whatever. Will was back into the mid/low 80s this morning and that seemed to get their attention. He's had sweating and some nausea yesterday and again today, which may be the fluconazole. They have (re)started another antibotic because they are concerned they don't have full coverage of both bacteria with the one Will has been on. And they are watching his white-blood cell count carefully. They think they might have "overdone" the GCSF a little, since Will's white blood cell count was in the 60,000 again today. (Normal range stops at 10,500, if I understand all this correctly.) Very high white blood cell count can make you feel like crap whether you're sick or not.

In the good news department: the spinal fluid tests were all negative which means there is no CNS involvement for the Cryptococcus infection. That means the treatment is significantly more easy to tolerate too. They thought Will lungs "sounded" clearer this morning. The nasal swab for both Rhino and Adenovirus was negative, so Will cleared them and doesn't have persistent viremia.

Liam is a Grandpa DH's and GG's until they leave on a trip tomorrow. My parents' have the dog and about 100 errands that need to be done at the house (let the cleaner in, take the trash out, etc.). We appreciate all this help beyond words.

4 comments:

IVF 40+ said...

Glad Will got the all clear on some of the issues. I so sorry you guys are struggling with all this. Thoughts and wishes to you both
EB

Mad Hatter said...

I'm so sorry, Elizabeth. I can't imagine what you must be going through. I hope that the medical team continues to work hard to get to the bottom of it. Sending you lots of love and prayers that Will comes home soon.
Love,
Maddy

mekate said...

oh sweetie, well shit then, good on this, shit on that, hard to know what to feel. Happy it is not worse, sorry it is not better. hate the whole damn thing.

I am sorry you are all going through all of this, it must wear you all down and out. I would be one exposed nerve. So, with that, please know I am sending love and wishes for good sleep and quick healing.

xox
kate

IVF 40+ said...

hi, dropping in the say I'm thinking of you and yours. Hope Will is doing better.
EB