Tuesday, June 26, 2007


On June 22, they took blood for another chimerism test (to test donor cells). Results will come back around July 20.

He is having a red blood transfusion today. His hemoglobin was 8.0.

They will remove the PICC line from his arm today.

He is refusing to take his meds. We've tried to mix them with various liquids but he is not taking them. Dr. Argawal said he will stay on Clarithomyocin (antibiotic for lung bacteria) for at least 6 months. It tastes terrible! I'm so proud he went two months taking it without much complaint. He is at his limit. I tell him they will put a tube in his nose. That threat worked a couple of times. He said he would rather have a tube in his nose. It feels like we are going backwards. He's having his PICC line removed, just to have an NG tube put in.

Here are his current meds:

Prograf (daily)
Prednisolone (every other day)
Folic Acid (daily)
Clarithomyocin (daily)
Septra (daily)
Zenopax (monthly)
IVIG (monthly)


Anonymous said...

Dear Aimee,

You are an amazing mom and I know how much you must hate the idea of a nose tube. Putting one in is not a step backwards, it just makes life a little easier. I have had many discussions with JAcob about removing his, but he has told me that he does not like the meds and he would rather have the nose tube. Although I hate how it looks, I like not having to fight with JAcob twice a day.


Anonymous said...

Just checking in. No more PICC line! Wow! That's great!
Why can't they make meds that taste good? How would they like to take those yucky medicines for as long as little David has?! They should make all drug manufacturers have to try their own drugs!! I pray you can find a way for him to take them easier. Ethan just has to have cherry syrup added to EVERYTHING, even grape flavored meds! Yum! Hopefully you can find a magic recipe for David, or he decides he doesn't want that nose tube after all!

Hang in there, Super Mom!!