Day 91

Posting a day late because the internet connection at RMCD was down. Today was another interesting day. Anya’s oxygen needs continue to fluctuate; she became irritable when moved around much. Now we think she may have some issues with transitions, because she gets irritable when she is moved, or when she is pooping, even to the point where her oxygen saturations drop. For a while her oxygen was turned up but they are trying to keep it at the same level where it was ordered. I am frustrated that she needs to be so uncomfortable before she can get the oxygen she needs to feel comfortable. I am anxious to get the opportunity to talk to someone about this tomorrow. They may do another test, called a TC, that checks her oxygenation and other things over the course of several hours and many different activities.

I hope this test is ordered so we can get to the bottom of this. For the past several days I have not held
Anya much because I thought she was in pain from her immunizations. If it is indeed her oxygen that is the issue, it needs to be figured out. Even though her oxygen saturations are good for the most part does not mean she is getting enough oxygen to do normal baby stuff. I cannot be fearful that her oxygen is low every time she gets fussy. For several days when I come to see her the nurse says Anya has been doing well and has been happy, then I start to play with her and hold her and she turns into a crab. When I visit I play with Anya, pick her up, try to put her on her stomach, try the bottle, all kinds of things. Nurses for the most part only change her diaper, check her vitals, etc, nothing that is as strenuous as when I visit.

I am also concerned that this may set her discharge back. It is really not a change in status but I don’t know how it will be perceived. In theory the test could be done her oxygen would be changed and then we could leave. The test only takes a few hours.

Sigh. Praying this will get resolved soon.

Estimated four days…