Day 25- A very, very busy day

If Anya could write, it would go something like this: “Today everyone kept messing with me, and it really pissed me off. First they made me go down to CT with like 10 trillion people. Then Dr. Kays stuck a needle in my chest. I thought they were all done and then they changed my ECMO circuit. I always feel junky when they change my ECMO circuit. I was so mad I decided to show them; so I went into SVT’s a bunch of times. Then more people then come over to mess with me!!”

That was today in a big messy nutshell. Dr. Kays was not happy with her progress so they went to CT. She did well through it. The CT shows a huge mass in the left chest that is preventing lung expansion. Dr. Kays then used a needle to draw off some of this stuff and found it was old blood. Anya is going to have surgery tomorrow to remove the old blood- it is probably a bunch of blood clots. Despite the risks of bleeding, Dr. Kays is confident that she will do well. The old circuit was nine days old, needing to be changed out soon anyway; so they went ahead and changed it out, better now than after surgery.

Then everything seemed to go to hell. Nothing dire, everything just went south; her oxygen numbers went down, she went into SVT on and off (the rapid heart rate she had before), her blood pressure went up, and she was really agitated. Then her belly filled full of air, it had been better this morning. Her ECMO flows were increased and her oxygen improved. Dr. Kays thinks that all of these issues are related, she always has a backslide after a circuit change, even if it isn’t exactly in this manner. The SVT’s may be caused by added pressure from her stomach and the mass; the stomach gas may be caused from changes in blood flow that have to do with the ECMO circuit change. When they do the surgery tomorrow it should resolve all of these issues. In the meantime, she is stable.

We didn’t get back tonight until 9pm just so we could see her relaxed; it took a while for her to settle down. Today is the first time I have felt really, really bad I couldn’t hold her. Up to this point the medical needs kept me from thinking about it much; but today she was SO upset. Intubated babies do not cry, at least not that you can hear. Her face was loud enough just from looking at her, we tried to settle her down by putting our hands on her, wrapping her the best we could.

We both feel very confident about tomorrow. Dr. Kays has been very reassuring; anyway it is the only option we have right now. There is no way she is going to improve without getting that junk out of her chest. It will be done in the NICU, but we are not sure of the time yet. He may do it first thing, or he may need to fit her in between cases. My money is on earlier in the morning. That peace that surpasses human understanding has kicked in again, I am grateful! God has Anya in his hands.