The Amazing Twin Adventure

More crazy confusion from Egleston. Today I talked to the cardio-thorassic surgeon's people. I wanted to get an idea of the timeline for when Will would be big enough to have surgery, what the procedure involved, etc. Well, they came back telling me that he would not be the one to do surgery. If anyone did do it, it would be the ENT because he doesn't operate on kids who have a trach. They told us that his recommendation had been to not do the trach, let Will grow, then do surgery. This was the first we had heard about that. The only thing we were ever told was that the trach was the only option. Now, chances are we would have gone ahead with the trach anyway because we really needed to get the ET tube out. Leaving it in increased the risk of damage to his airway and lungs and it prevented him from being able to do anything but lay there sedated. And he has come a looooong way since he got the trach. Life is much better for him without the ET tube, so I think, in the end, we made the right choice. But it still would have been nice to have all of the doctor's opinions presented to us. And this brings me right back to the problem of hearing something different from every person I talk to. It seems like no one is communicating and there doesn't seem to be a single person that knows the whole story when it comes to Will.
But Will looks good. He's so alert and pretty content. He's sucking down his bottle like there's no tomorrow and they're really pleased with how well he's doing. If he keeps it up, we'll probably be able to avoid a gastric tube (fingers crossed!!) His kidney ultrasound came back fine. They think he was just a little dehydrated because he missed one of his feedings. He pulled out his NG tube, which delayed his feeding schedule, so he missed one that day. Dehydration in babies causes their blood pressure to go up sometimes.
Hays is still keeping us up in the wee hours of the morning. He didn't sleep much during the day today and he's pretty zonked tonight. Hopefully he'll be too tired for any 4 am shenanigans, and that will break the cycle. I'm praying it will, because I'm exhausted!!!