Well, when I got up this morning at 5:30 am to get ready to head to see Claire, I was not expecting the kind of day we had. I had noticed and pointed out yesterday that since last week, I had noticed that some of Claire's cyst symptoms were returning. These included lots of grunting and straining, acting uncomfortable, not eating as much, and today I noticed swelling in her lower body.
The nurse, resident and I had talked about it yesterday. When they came in for rounds today, we had a new attending that we had only had once during a weekend, so I didn't know much about him. I didn't even mention the words "ultrasound" or "drain" and he basically said they were going to do both today and not to wait. I was like, wow, usually I spend weeks begging for these things! Now I am not prepared!
So I figured that the radiologists would refuse to do the draining since they had basically said that would be what they would do if asked again. But they agreed to do it again. I didn't think the cyst was as large as it was at the last draining just by looking at Claire's belly. It was distended out to the sides a lot, but not as much out where her belly button is. They ended up not really sedating Claire this time which was not the best idea b/c they had to hold her still and she got mad.
But they drained about 165 mLs off this time (it's been less than 2 weeks since the last draining when they got 345 mLs). So about 5 ounces this time. She acted like she felt a little better, but was kind of groggy from some Tylenol they gave her. But she ate well afterwards. So we will see how it goes.
The radiologists said by draining they cyst, they are making it more complex each time. Basically it started out as one huge fluid pocket. Each time they stick a needle in there, it makes "debris" or disturbs it. This can cause the one big pocket to form smaller pockets within the cyst and therefore not allow them to drain out all of the fluid.
So, we are just waiting to see who shows up for the meeting tomorrow and what they all think. I have been warned not to expect a real plan as of tomorrow afternoon. When you have than many different doctors all giving their opinion, I don't imagine it will be a clear cut meeting. Supposedly, there will be doctors from Claire's neonatologist team, cardiologists, cards surgery, cards anesthesiology, liver surgery/general surgery, and radiology. We are hoping they will allow one of Claire's primary nurses to go to the meeting and take notes for us! So needless to say, I am very anxious.
Thank you for all of the prayers today for Claire. Please also add to your prayer list Claire's BFF Eliza who also had a rough day. And also keep some new friends of ours in your prayers as they deliver their daughter Clarie tomorrow at Duke as she will be in the ICN as well. Keep your fingers crossed that whatever is supposed to happen at this meeting tomorrow happens.
The Scott Family