March 26, 2011

Piper had her MRI this morning and everything looks good. The docs didn't see anything of concern. The only thing that showed up was some scarring from the lumbar punctures she gets every month. No one has a real answer for why she is not using her little leg. The doctors think it is due to mal nutrition, but are not ruling out nerve damage which can be a side effect of one the chemo drugs she has had large doses of.

Piper's CMV levels did not drop enough to make her oncologists happy, but the infectious disease doctor is not as worried about them. The ID doc does not think that her CMV is what has been causing her to have such bad diarrhea. From what I can gather the CMV is or has played a part in her digestion problems, but the CMV levels are low enough that that alone would probably not cause her such aggravation. Her endoscopy last week did show she has colitis and the GI doc thought it may be caused by her CMV, but the biopsy showed signs of allergens. So we will be seeing an allergist during our stay this week and hopefully get some answers. Until then she is on "gut rest". Which means no food. She is getting nutrients and fluids through her line and can have a hypo allergenic formula that she seems to like ok. This sucks because we have been working for almost a year to get the kid to eat well and it has only been the last couple of months that she has been acting hungry and wanting to eat. The purpose of the gut rest is hopefully to heal her intestines and find out what she is allergic to if anything so she can start eating normal again.

Monday or Tuesday we should have what is called a care meeting with all the specialists involved in Piper's care. Until then oncology is holding off on her chemo for this week and the ID and GI have decided to hold off on her anti viral meds and continue the gut rest until everyone is on the same page. Right now they all seem to have different ideas about what is going on and what the next course of action will be. Maybe this will be the first step in getting some real answers.

We don't have a time frame for this stay. So we may be in for a while.
Later,
Chad