Theo is doing ok with his new medications. We have had to give him morphine on an as needed basis mabye once or twice a day. The methadone is given three times a day instead of every 2-3 hours like the morphine. He has had some trouble with the choralhydrate. It puts him to sleep pretty quick, but it really upsets his stomach. As soon as we give it to him he starts gagging and spitting up. Some nights he tolerates it better than others, but it always bothers him. And it's no wonder, it smells terrible, like furniture polish. He usually goes to sleep while he gets his last feeding and then wakes up some time after, sometimes earlier, like 2:00 a.m. and other times around 4:00, so whenever he wakes up, he gets the chloralhydrate and then he usually sleeps till 7:00 or so. Jamie says that when he stays downstairs with him, he sleeps less and always has a horrible time with the chloralhydrate, throwing up and gagging terribly. Who knows what makes the difference from night to night?
Over the last couple days, he has been sneezing a lot and gagging and coughing up a lot of mucusy stuff throughout the day. At first I thought maybe he was getting a little cold, but I don't think that's what it is. I think the tube is just really bothering his nose and throat. So, we are still taking turns staying downstairs with him as long as he continues to have these gagging and choking problems. He has his last feeding at midnight and since he's been gagging, we slowed his feeds down so that it takes about 2 hours to finish, he gets his methadone dose at 1:00 a.m. and then the chloral hydrate at some point during the night after he wakes. We stay with him so we can be right there to sit him up when he gags and to clean him up if he spits up and to give his medicines. We are getting a little more sleep than we were before the methadone and chloralhydrate were added, but he still needs one of us to be right there with him. Hopefully, after the g-tube is in place, he won't have the breathing and sneezing problems although I don't know whether it will help with the gagging. That has definitely gotten better since we started the prevacid, but Dr. Haynes told us the tube may not stop the acid reflux and he might still have those problems even after the surgery. We'll just have to wait and see. Since we are able to sleep a little when he is sleeping, particularly after the dose of chloralhydrate, I think it's been easier. We are both still really tired and mentally and emotionally just exhausted all the time, but I don't expect that to change for a long time.
We have been looking up different video/photo services to put together a DVD of photos and video of Theo with music. That is our latest project. I want to have a little montage of still photos and videos of Theo. We want to use Thelonious Monk's famous jazz composition 'Round Midnight which is, of course, Theo's song since he is has the same name (except without the "o" a the end) and having been born at 12:02 a.m., as well as this really pretty lullaby song I love called Night Owl. We haven't picked a third song yet.
I'll continue to keep everyone updated--please keep us in your thoughts and prayers.