11/30/2009 update

New blankie!
Well, I was able to make it to the hospital in time for rounds this morning. If at all possible, I try to make it to the hospital for that part of the day. However, sometimes it's just not possible with a toddler who needs her mommy too. We have been VERY thankful for our nurse practitioners who have made it easy to communicate our concerns regarding Malachi's care. They have started increasing his caloric intake which is necessary due to his heart disease. His reflux medicine has been stopped now that they are back to feeding him over a span of an hour and a half as opposed to a bolus feed, but for a few days he was unable to completely tolerate the bolus feeds. Neurology came by to perform an EEG on our little man this morning to check for suspected seizure activity. Apparently seizures are hard to identify in newborns, so they are doing a scan just to be safe. We should get the results tomorrow or the following day. They are checking for "subclinical seizures" due to the fact that during some of his desat episodes last week his eyes seemed to kind of roll back. Also, a couple of the nurses who took care of Chi at the beginning of his hospital stay thought that he was acting very different from when he was under their direct care. He is also showing more evidence of facial palsy on his right side. His eyelid is pretty immobile--either staying open or staying closed, definitely not as active as his left side.

The choanal atresia repair is still scheduled for this Friday, December 4 in the afternoon sometime. He will have stents placed in his nasal passages during surgery. They will need to stay in place for two to three weeks. It is possible that he will need further recovery from that for a couple more additional weeks as well.

When that is fixed, they will need to assess his abdominal structure and function as well as swallowing studies and that sort of thing. With CHARGE, swallowing dysfunction is quite common and we will likely need a G-tube to be placed prior to discharge. If he has reflux problems (which he has already showed signs of), then he may need to undergo yet another surgery--nissen fundoplication along with the G-tube placement. Then there will obviously be a recovery period for that as well as training for John and myself to learn how to operate the G-tube properly in order to feed Baby Chi.

In Daddy's arms

What a cute kid!