Day +10

I arrived back at the hospital this morning to a zonked daughter and husband--the night had been a repeat of the night before.

At about 3am-ish, Jeff awoke to a team of people huddled around Zoe trying to assess her labored breathing. Many of the same things happened as the night before: the PICU attending was called in and the respiratory therapy team was summoned. She was suctioned and nebulized with epinephrine, and that seemed to calm everything right down. But not without a lot of drama first.

Her platelets did not boost. They dropped from 7 to 5 this morning (a normal person has arround 150, they would like her to have at least 50). They started her on aminocaproic acid to help her blood to clot in the absence of enough platelets. The fact that she still has a blood clot in her left leg makes the use of the aminocaproic acid a bit risky in that it could increase the size of the clot.

Everything is a tenuous balance in this process.

Despite all that, Manley did say he thinks Zoe is perhaps turning a corner for the better. Her WBC's showed a little blip from 0 to .2, and then back down again. But it's a sign that something is starting to happen towards engraftment.

Her rash is getting better (yay steroids!), but her petechiae is getting worse (boo platelet deficiency!). She got HLA matched platelets last night, but no boost--as I mentioned before. Manley said that a donor was going in today to get apherised for more platelets for Zoe, and that those would be ready tomorrow.

He said that one possible reason the platelet level doesn't boost for her is that her massive spleen is gobbling them all up. Spleens hoard blood, and very large spleens hoard A LOT of blood. Hers is massive, even larger than it was when we checked in. I may have mentioned it before, but osteopetrotic babies' spleens grow very large to compensate for the diminished capacity of the bone marrow to produce and store blood.

On a random topic, a friend wrote me with a very good question: why didn't they just give Zoe Tylenol through anal suppositories when her fever was raging and she was unable to take it by mouth? I asked the nurse that tonight, and the answer was just as good: with mucositis her entire GI tract is torn up and compromised--from mouth all the way to anus. Suppositories have the potential to damage the tissue, thereby opening it up to fecal matter and drastically raising the risk of infection. Also, with her low platelet count, they don't want to do anything that could cause her to bleed.

Well, off to bed. Hopefully this night is a better one for the little squirt. Such a remarkable baby, she is!