Originally Posted on | October 28, 2008
(This was supposed to be posted Tuesday, but it wasn’t.)
John’s heart procedure (the balloon aortoplasty) was scheduled for tomorrow, but now has been delayed until Thursday morning at 9 a.m. The reason is that they need to have a surgeon on standby in case something goes wrong, and no one was available on Wednesday.
Since last Wednesday, we’ve been at Del Children’s Hospital. It was tough to move, but it has been nice to have a room to ourselves and be able to have more visitors. The transition from Seton to Dell Children’s finally settled down on Saturday. John and William’s Aunt Liz and cousin Annie came to town to help out (a lot of other family has been here as well during this time). We had both a fair amount of time with John and William. And just the two of us. Plus, John ate all of his meals from a bottle from 8am to 5 pm. No desaturations at all. He hadn’t had a seizure for 3 days.
Then, Saturday night, John began to have seizures again. The most significant activity since the first day or so after his birth. Two peak episodes surrounding some constant behavior for about two hours, about 11pm to 1am. They had to resuscitate him—he wasn’t breathing and his heart rate dropped very low. They introduced a third anti-seizure drug and put him back on the CPAP. That seemed to bring things under control.
On Sunday, they took John off the CPAP and back on a nasal cannula, and they started doing another 24 hour EEG study. When they started him on the study about noon, it become clear that the seizure activity was still occurring, though it was not resulting in physical symptoms due to the drugs. So they decided to re-introduce Phenobarbital to stabilize the situation. It does appear to have gotten his seizures under control. But because he keeps having breakthrough seizures, they have decided to keep him on the EEG until after his surgery so they can monitor him.
For a while, all of his food was going through the tube. The Phenobarbital is making him pretty drowsy—which is why they took him off of it in the first place. But he has now started waking up a bit and eating at least part of his food by mouth. And earlier today, Kelly gave him his full bottle!
Kelly and I are pretty much on a day shift/night shift routine. William is coming up here part of the time, though it was tough last week when he was sick and he couldn’t come up at all.
We’d very much appreciate your prayers for John and our family. Specifically, for his aortoplasty on Thursday, for a stop to his seizures and wisdom for the doctors in treating them, for peace for our family, comfort for John and William, thanksgiving for the many, many people who are loving and helping our family right now, and that we would continue to exhibit/share the peace of Christ with those we come in contact with through this process—that seems to be a big part of the reason we are going through with this.