Surgery

Jack had the surgery this morning at about 9 AM. They removed the rest of his adenoids, his right tonsil (which apparently had been left in last year??!!), trimmed his uvula, did a probe of his airway, cleaned the wax out of his ears, and did a CT scan. He was in in the OR for about 2 hours, which about 45 minutes of that was for the CT scan. He's resting now in Dan's arms. He won't let us go and one of us needs to be holding him at all times. He's really hurting and he's having some trouble with his airway from the swelling. They have him on IV steroids, blow-by oxygen and a nasal trumpet - a device he decidedly does NOT like! Hopefully he'll be able to get that out first thing in the morning. In the meantime they have him on some pain medication that keeps him sleepy and a little out of it so he doesn't pull everything out.

They did a lot to clear his airway, but the docs here still think he needs a jaw distraction. When we met with the docs here back in October, they had put us on the surgery schedule for a jaw distraction on February 12th. We were hoping that he wouldn't need the surgery and we could just cancel it. But now we're faced with having to make this huge decision about a jaw distraction without really knowing if the surgery he had today will fix his sleep apnea. He will need 6 weeks to recover before doing a repeat sleep study to determine if his sleep apnea is resolved. If we reschedule the February 12th date, Dr. Bartlett is now booking into April. Lots to think about.

Jack's teeth are perfectly aligned right now, so a jaw distraction will put him out of alignment and give him an underbite of about a centimeter. This will make it hard for him to chew and eat. He would stay this way until he reaches skeletal maturity (17 or 18 years old) and then they can do a surgery to put his top jaw in alignment with his lower jaw. It sounds just awful - I have no idea what we're going to do. Jack's eating is very tenuous as it is - he's 100% oral now, but it's only purees. We're working on textures and self-feeding. If the jaw distraction creates more of an oral aversion he may not learn to chew for some time, and he may stop eating orally altogether which means we would have to go back to g-tube feeds. The thought of that sends me into overload - he was vomiting on average 4 to 6 times a day (our record was 8 times one day) when he was fed through the g-tube. We just tried feeding him overnight through his g-tube a few months ago because he wasn't eating very well due to a cold and he woke up at 1 AM and vomited everything up. We had the pump set to a rate of 1 ounce per hour - you can't go much slower than that.

Of course things could go the other way too. His eating may get better when his airway is opened up. And they told us that by distracting the lower jaw, sometimes that encourages the upper jaw to grow down and meet the lower jaw. This takes years to happen, but it does happen sometimes. Maybe we should look at the bright side of all of this and hope for the best. I don't know. Dan and I have a lot of thinking and talking to do. It's a bit overwhelming right now to take in. I think we need to put this on the back burner, get through the next few days, and talk it over when we've had some sleep.

It looks like we'll be in the hospital for a few days. We're hoping to be released on Thursday, but we'll see how things go. We want to be sure we have at least one good night in the hospital and then one good night in the hotel room before heading back to Boston.