Hospital Chronicles: Part Seventeen Thousand and One

I was feeling happy when I woke up this morning. It was going to be a good day. Dominic was starting swim lessons and I was going to pick him up early from school to take him there. Then, best of all, one of our nurse friends from UCSF was going to come to our house and babysit Cora tonight, and Dom and Cosie were going to Grammie and Papa's house so that Jason and I could actually get a date night. It was all very exciting.

But before any of those fun things happened, I needed to take Cora to another doctor appointment at UCSF. Today we were again seeing the gastrointestinal specialist to try and solve the seemingly unsolvable riddle of why Cora can't tolerate food and can't gain any weight at all. The doctor put us on a new enteral formula which is supposed to be very basic and easy to digest. However toward the end of the appointment when she was examining Cora, she noticed that Cora's liver was very enlarged. She also noticed that she was breathing fast and breathing harder than she had been during our last visit. These observations prompted her to send us across the hallway to our cardiologist for an evaluation.

I'm sure you know where the story ends.

Yes, we were admitted today back to our home away from home, UCSF, back to the same room we discharged from and have spent so many nights in.

Although I have more or less accepted it now, I can tell you that I spent the better part of today being very annoyed. I think the most frustrating part was not being able to take Dominic to his swim lesson. I don't know why it felt like such a let down, but I think it was because I had looked forward to doing something very normal, something just for Dominic, for a long time. This morning when I dropped him off at school my last words to him had been, "I'm excited to pick you up early and take you to your swim lesson. If I have time, I will even bring Cora into meet your friends at school." And then I had to stand him up, and not do either of those things, and even though Jason was able to take him to the swim lesson it felt incredibly sad to me to watch the hour of the lesson tick by, as I sat in a cardiologist's office, knowing that we were going back to the hospital.

I really hate not to be able to follow through on promises or to just create the type of experience for my kids that I would like them to have. I don't want to be a flaky mom. I know that I'm not a flaky mom. But as usual I have so painfully little control over the things I'd like to.

I think the larger issue is the overall disappointment that we have been just settling into normal life at home, and then things got swooped out from under me when I wasn't expecting it at all. Unlike the last time we were admitted, I was just going to a routine appointment. I didn't have the slightest clue that when I went to that appointment this morning I wouldn't be able to go home. It's like I got hijacked.

So in any event, the short-term plan for this hospital stay will be to increase Cora's diuretics to see if that will help her lungs. (You might recall we did the exact same thing on her last hospital stay.) But this time I am also hoping that we might be able to get to the bottom of a couple of these issues that have brought us back again. I'm hoping we will consult with a pulmonary team since many of Cora's issues seem to center around her lungs. It sounds like we will also possibly take some steps forward with the G.I. specialist that we have been seeing. There has been talk about a g-tube, which is basically a point of access directly into the stomach for feeding. There has also been talk about the need for Cora to have continuous intravenous nutrition. We might work on that during this visit as well.

So here we are again closing out another day of hospital life. It's hard for me to believe, but then at the same time not that hard. I know this could just be a couple of days and then we could be home. But it also could be longer and I know that too. It seems to be much more difficult to get out of the hospital then to get admitted.

I'm tired.

I don't have any pictures from today so instead I will attach some from the last few days in our wonderful, very blessed, almost close to normal life.