Day +18

Well, folks.  We aren't going home tomorrow.

Honestly we had the feeling that it wasn't going to happen. The best scenario now is Wednesday.

Clara's ANC has been up hovering in the 500 range for the past few days. She hit 700 but then dropped down again and was again at 700 today. She also had a fever a few days ago which caused her to need to be back on antibiotics again. Fortunately nothing has grown from her blood cultures. I actually think that the fevers coincide with flair ups of her graft versus host disease. She gets red splotches on her face, back, and chest. They are significantly hotter than the rest of her body to the touch.

Each day they have been scaling back medications that she is getting. To go home we need a majority of her meds to be oral instead of IV (I am not really sure why they need this). They prefer to transition one med at a time to see if she has any reactivity to the oral version of the med so it takes time. We are also scaling back her TPN (the IV feeding source) to a 12 hour IV infusion. This requires a slow transition (I think so that it won't shock her liver/kidneys).

The goal with the TPN transition would be to give her full nutrition at night while giving us the chance to teach her to eat during the days. We could take the alternate route of the NG tube but that makes it harder to swallow and we want to give her the best scenario for learning to eat. Hopefully we can quickly transition to a baby that eats by herself without the TPN (the TPN does cause some issues with organs - we aren't made to get our nutrition by IV).

We are also being delayed because she has procedures that need to be done before we leave. Those procedures are an MRI/CT to observe the status of her fungal infection on her kidney (and anywhere else it may have spread) and to take a bone marrow aspirate to test her new bone marrow. Ideally the new bone marrow is 100% donor marrow but sometimes the host marrow still represents a significant fraction of the remaining marrow. This will help determine the chance of a relapse of the leukemia.

Clara has been mostly tired and irritable (as have her parents). She has had the worst diaper rash immaginable lately that we are treating with a variety of ointments. It has improved over the past few days but has to be very painful for her. It is also obvious that she is bored in her room and would love to be able to move around. She really perks up when we have visitors. I'm sure that she is as ready as we are to finally be home and hopefully stay there!