Day 84

Nothing really new happened today. We spent a lot of time cuddling. She is off her antibiotics now so the discussion on when her central line can come out should start.

Smushy face!!

 

There are a few routine tests they do at the end of a baby’s stay to get a baseline on how they are doing. She had an MRI of her head today and she will have a cardiac echo and a chest x-ray tomorrow. The MRI is a little scary. It can be expected that the MRI results of a baby that has been as sick as Anya will not be normal. In Dr. Kays experience abnormal results do not necessarily end in an affected child. The cardiac echo will check out her heart and how it has been affected by her small lungs. Small lungs increase the pressure in the heart, ending in pulmonary hypertension. The chest x-ray is a front and side view, to be able to see how much she has changed in the years to come.

Anya can get fussy at times and it is difficult to know why. Of course she is a baby, and babies are allowed to do such things, but I am used to looking for medical reasons she should be fussy. Sometimes there are medical reasons why she is fussy: today when she came back from her MRI we were putting her back on the oxygen that was on the wall. She started de-satting and the nurse/RT helping with transport realized the setup on the wall was loose, and she wasn’t getting any oxygen. During this she started crying, but to me she looked pink and fine; I thought she was just fussy from the transfer. If I had been home I would not have thought anything was wrong. Eventually I would have but it still makes me nervous. I know I can do this but now that we have to deal with it for real it is anxiety provoking. I am going to be asking 10,000 questions this week.

So I would appreciate prayers that we are able to gain more confidence and I don’t have a mental breakdown on the drive home! I am joking! Kind of.