Saturday, September 5, 2009

Family Transplant Anniversary Celebration

Family transplant anniversary celebration tonight. It was a little subdued since Will had a very high fever yesterday and a more mild fever today. Hard to tell what is going on. His regular pulmonary doctor finally weighed in on Friday and discontinued the IV ganciclovier (surprise!) since he's not convinced Will has a systemic CMV infection. There was shell vile* on the second day from the bronchoscopy lavage, and the serum level was lower than it's been in a long time; so, that doesn't scream active CMV infection to, well, anyone, or it seems like it shouldn't. They treated with iv ganciclovier because they didn't have any other idea or explanation for Will's symptoms. This is annoying to me in the extreme since iv ganciclovier is toxic to kidneys and to bone marrow -- two things that especially need protection in Will. (Also, there are many other possibilities: not yet healed from the last infection, bacterial infection, fungal infection, viral-related BOS step-off since we know that viral infections can be associated with them and we suspect Will did have a CMV infection at the end of July. This last one is very unpleasant to think about.)

At any rate. I think Will is really wanting to hold out from the hospital until he is scheduled to be seen in clinic on Tuesday. That's great, except that if he has another high fever I really think he is going to have to go in: (1) he has a picc line, so it could always be a line infection; (2) he was on iv ganciclovier for a week and may well be neutropenic which means any fever is very concerning; (3) he is congested and doesn't feel well, and these things don't tend to go away on their own. Last night I was very worried about all this. Today, I managed to mostly put it aside. Will is really congested; so maybe it's *just* a bacterial infection. We'll see.

We used our special, nifty little candle holders for dinner (Thanks Auntie L!) and after Liam practiced blowing out all the candles. About half way through he figured it out and that was it, all the rest got blown out before you could blink an eye. Darn it, I had pictures to post, but I didn't get them into the computer before the camera battery ran out. I'll post them tomorrow.

*Check out this link -- it's a google book!


IVF 40+ said...

Congratulations to you and yours. Can't wait to see the pics! Sending wishes for a reduction in congestion and fever.

mekate said...

Happy year,
happy hope,
happy gratitude.

fucking fever. I know that each day is probably this way, an inventory of things that are ok and things that are not, and an assessment of where the balance point lies. Will's transplant and side effects sort of put into relief all those things all of us live with but so blithely can ignore-- this very bone deep uncertainty of what is and what is next. I truly honor the donor and the donor's family for their bravery, and Will's too- he stepped off of one ride and onto another with incredible bravery, and you-- knowing, loving, extra extra brave.

so to all of you, I know that bravery does not equal ease or certainty or the kind of bonus points that get you a free pass to happyville, but I sure wish it did.

If so, you'd all have the best cottage on the lake.

with love,