We had a little rougher night than we've had before on this hospital stay. James is good, but Lydia and I slept a lot less. Now that James is out of the Cardio-Vascular ICU and in a more normal room, we get to handle most of his care - feedings, diapers, sponge bathes, etc. This is fine and good, but the hospital wants us on a round-the-clock feeding schedule instead of the one we are all used to (ie - sleeping through the night). So, we got James up every 3 hours through the night to eat. He didn't eat nearly as well, but I think that is more due to him wanting to sleep than anything wrong. We did take turns, with Jon (me) handling the 11pm and 5am feedings and Lydia handling the true dead-of-night feeding at 2am. Otherwise, since reaching a more normal awake time, James has eaten perfectly.
We have had a busy morning. James had an echo and chest x-rays done to check to make sure everything is working like it should. I don't expect anything negative to come of this, but they haven't told us one way or the other yet. Of course, the techs who did the tests could tell us, but they aren't allowed to. Oh well!
Later today, at noon, we have to stop feeding James in order to prepare him for a swallow study. Many Down Syndrome kids have difficulty swallowing, and James has sometimes choked a little on his milk. So, we are going to do the test to see if he needs to have his liquids thickened. If he does, this could also help speed up his feedings, as he won't feel choked as he eats and will probably want to continue eating longer at each meal. The study will also help us justify to the insurance people the cost of the thickener, which is apparently not cheap! Is anything cheap?
One minor bump in the road occurred last night. James had a fever again (101). This is due to the nurse forgetting his pain medicine for several hours. I doubt that he would have had this problem, otherwise.
I think that is all for now. Please continue to pray. We love you all.