Sad Study

We went to the med center for the third time this week today. On the agenda for today was a swallow study. Mrs. Tamara came this morning and got you good and warmed up. She tried a few practice swallows and you did great. We were super optimistic the study would go well.

At the hospital, I continued doing your oral stim while we waited. You were doing so great. Dr. T and the techs came in, we got you set up, and you were given the first squirt of barium. And it was over from there. Immediately you gagged, started coughing and threw up. We tried several times but didn’t get any further. At the end you just flat refused to even shut your mouth, so we knew you wouldn’t swallow anymore.

We got a tiny peek at what happens when you swallow. This time you aspirated a little. Unfortunately, I don’t think this is a good example of what happens most often. When we are at home, in our own environment, eating something you like, taking our time, you do much better. I explained this to Dr. T who completely understood and agreed. She said that if I felt comfortable trying tiny tastes at the house, she trusted my judgment. But from what she saw today, she couldn’t give me the green light to push the oral. As a doctor, she needed to tell me to protect the airway and let the feeds go. We scheduled a clinical visit in a few months, and at that time we will probably set up another swallow study. In the meantime, she said to definitely keep up the non-nutritive.

I wish it had gone better. Not only so that we could practice feeds more confidently, but so that you didn’t have to go through another bad oral experience. You cried at least half an hour after the study, and were very frustrated. I hate that for you.

A couple interesting things came of it though. For one, I saw your adult teeth in your gums. They are huge! Well, probably normal sized more than huge, but I am used to your tiny, half developed, no-cholesterol-helped-them-form teeth. These new teeth are not going to be fun to cut. But I bet they’ll be pretty!

Also, Dr. T said it was a good call not to do the cleft palate surgery. She had seen in the notes that we saw Dr. S on Monday and decided against it, and had assumed Dr. S was the one who wanted to delay the surgery. From what she saw on the x-ray, Dr. T says wouldn’t recommend ever closing it up. She feels like you hold your head back to keep your airway open (like in CPR when you must tilt the head back to open the airway). With your airway being so narrow, Dr. T sees the cleft as a safety valve like I do, only for oxygen intake. Most likely, air goes up your cleft, into your sinuses and down your throat, just as if you were breathing through your nose. She was surprised that you have never had airway problems other than difficult intubation before, and guesses that your cleft is what has helped prevent a trach for you. God definitely knew what he was doing when he left that little slit in the roof of your mouth!