August 8, 2007

Jordan is back on his feedings now. Of course the term feedings is relative. They use a syringe to put the milk into a tube that goes into the stomach (he is about a month away from learning how to swallow). The syringe goes constantly at about the rate of an IV. However, it is milk and they are giving it to him.
Last week, I said that we expected to find out the results of the heart test by now. It was pretty much as I expected. The hole is still there, but the medicine shrunk it a lot. He is having no symptoms and no problems resulting from the hole. Eventually the hole must close on its own, or with the doctor’s help. Right now though, he is doing fine, so the doctor’s aren’t going to do anything until he gets bigger. Let me say this again. The doctors are going to leave his heart alone unless it stops working so well. Then they will try and fix it. And I agree with them. He spends all day sleeping and eating, and I don’t see any reason to change that for several weeks.
Actually, he doesn’t just sleep and eat. Last night he learned a new trick. He pulled out his ventilator tube – twice. Of course, this led to a couple of desats. He can’t breathe without the tube, but the only way to get him to stop is to strap down his arms. He moves a lot when he is awake, but he calms down a lot when he sleeps in a comfortable position. Right now, he is pretty stable and is doing well. There is no change expected in treatment other than feeding him more. His only job right now is to eat and sleep, which will help him grow. In the meantime, I’ll keep updating, but everything is pretty good.