ct scan done. now we wait.

Thanks, everyone, for sending us your love & support. Iris did really well, though she hated to have the gas mask on. It was really hard to have to hold her down while they put the mask on her. I'm frustrated that I didn't insist that we do it in a different way, but now I know for next time.

Just before the anesthesia

We got to the hospital around 9am and we left Iris just after 10am. We waited for maybe an hour or so. I went to the hospital library and checked out some "parenting sick children" books, which Evan and I might read together.

We were finally allowed to see her after she had already woken up. We had made it clear that we wanted to be allowed to see her the first possible moment, but we don't feel like we were listened to at all in this regard. She was awake and the nurse had been trying to give her Pedialyte and apple juice before letting us see her. She was very scared and her throat hurt from the breathing tube that she had had inserted.

We hung out in the recovery area for a while and fed her lunch and that helped a lot. She was very groggy and needed extra oxygen since the anesthesia wasn't entirely out of her system.

Very groggy, but happy to be in a wagon.

The rest of the day went fine. She is on extra oxygen now -- a full liter -- but the anesthesiologist told us that she should be back to her normal flow tomorrow. We went on an evening walk and she kept talking about the moon. She loves the moon. 

And something really exciting happened this morning. Iris used her potty for the first time. Evan and I were so excited.

We have to wait a week to get the results of the CT scan, and who knows how long the genetic test will take. One of the doctors we'll meet with next Friday is a cardiologist/geneticist and she suggested an aortopathy panel, which tests for the other genetic mutations that would cause the weakening in the aorta that we see in Iris.

I don't know whether I hope they find something or whether I hope that the genetic tests turn out negative. I think that it makes sense to treat Iris as if she has a connective tissue disorder, even if they can't pinpoint the gene causing the trouble. The problem is that if she needs surgery again, the connective tissue disorder complicates the possible remedies. So, it would be good to know for certain that she has/doesn't have one.

ct scan plan

Iris gets her CT scan tomorrow morning. She has to have been fasting for 8 hours, so we kept her up a little later than usual tonight and gave her some extra food. Then I'll wake up at 4am and give her some formula, which she can have 6 hours before the scan. The fasting is required because she'll be sedated.

The sedation makes preparations easier in the sense that I don't have to try to explain the whole thing to Iris. The hospital does have a little model CT scanner for stuffed animals, so I imagine that we will make use of that tomorrow.

In addition to the scan of the heart, the pulmonary team wants to get some images of her lungs. She'll also have blood drawn for some genetic testing -- an aortopathy panel. And just to round it all out, they'll check to see that her kidneys are flushing the Losartan out properly. I suppose that she'll be on Losartan for the rest of her life, which is a bummer, though I'm glad such a medication exists, I suppose.

We then wait a week to get the scan results, so next Friday we'll meet with a team of cardiologists who will be able to tell us how big the bulge is in the aorta and also give us some more information on the leaking happening with the aortic valve.

In other news, today Iris officially started saying "no." It's fun to see her experimenting with new words to see how people react.

Evan and I are holding up okay. It seems like our emotional reactions to all this news comes in waves. I am much more vocal and weepy with it all, while Evan only occasionally mentions his feelings. This is true generally. We also have been so busy with the rest of life that we've had very little time to sit together and process it all. We work well together when there are decisions to be made, or if there is hard thinking to be done. Situations like this require a lot of that.