Monday, January 25, 2010

Apple slices with almond butter & pulmonary clinic

Apple slices with almond butter are Liam's new favorite snack. Evening story time generally consists of apple slices, almond butter, and a big glass of milk. I'm watching them read together now, snuggled up in the chair.  Liam prefers to just eat the apple slices and then scoop the almond butter out of the dish with his fingers.  He very much wants to be sure to get all of the almond butter.  Liam started his antibiotics yesterday, but still isn't noticeably better in the cough department. I got a phone message from the pediatrician today, something about check back, but I accidentally deleted it when I was trying to save it so. . .I'll have to call them tomorrow. Darn.

Pulmonary clinic all day with Will today. And, next week it will be infectious disease clinic (because of Will's immune suppression, he's followed by ID) and oncology follow up. The most exciting thing for the doctors today was that Will's INR was 7.1 and then, in the re-draw/re-test, 7.7. They want it to be below 3, so this gets their attention. Since Will was tentatively scheduled to go off blood-thinning therapy in about a week, the docs talked with one another and decided to just stop it today. And gave vitamin K to reverse the blood-thinning effects. Figuring all this out involved an unscheduled visit to the anticoagulation clinic, a repeat blood-draw, and two phone calls as we were driving back home. So, good-bye, finally, follow-up from the great picc line clot drama of 2009. Will is happy to see you go.

The most concerning things are that Will's lung functions continue to be down and his white blood cell count seems to be going up. The lung function thing may have to do with his inhaled antibiotic, at least in part, but it probably also is a result of more permanent damage from bronchiolitis obliterans syndrome and/or all the infectious complications Will has suffered over the past year or so. The white blood cell count thing has no obvious explanation. It will be something the oncologist probably will want to consider next week. In the meantime, Will is to go off his inhaled antibiotic basically to see what happens. This is welcome (it is Colistin, a crappy, unpleasant therapy), but also scary, since it seems to have kept Will out of the hospital for the past 2 months.  We are to watch closely and call at any sign of problems.  Will coughed up a sputem sample that they'll send for analysis, which is good, because if he does start to have another infection exacerbation the docs have some relatively current informaiton about what the infectious agent might be and what antibotics (if any) it is sensitive too.

That's all.  It's a long day, but it was nice to get to spend it with Will. 

1 comment:

mekate said...

Yay for apples and almond butter and reading aloud.
Yay for Will being off of blood thinners (holy crap)
Isn't it interesting how each physical travail has it's own language-- you speak so fluently in pic line and sed rate and all the crap that you and WIll deal with every day- I am so sorry for the ongoing struggle, especially the unknowns and unknowables, and I wish somehow you could have a sustained break from the worry. Hope Will does great off the inhaled meds, and hope they culture something useful/helpful (also known as something treatable or nothing at all please), and hope the white blood cells are just being over zealous.

thinking of you all
January thaw here, all is melt.
warm enough to be nekkid outside even. Although I won't, I could.