Yesterday I forgot to talk about prayer time. Greyson and I took some time to pray for his old friend Sebastian. It was really sweet. Actually Greyson let me come up with the words and he pretty much just prayed a prayer of affirmation along with mine. He did fold his hands (with help) for the prayer. I haven’t commented on Sebastian as I haven’t seen his parents in awhile. We saw them yesterday, which was a big day for them. Sebastian had surgery to take out his temporary brain shunt and put in his permanent one that drains into his stomach cavity. The surgery went well and Sebastian seems to be healing well. Today we were told that Sebastian’s heart appears to be OK so we are praising the Lord for the good news.
OK back to Greyson. Well not a lot to report today. His c02 was 70, not great but there was improvement in some of the other numbers that make up his blood gas. Part of those numbers are measures the acid level of his blood and it was better so the drug they are giving him to get his system balanced out seems to be working. We’ll see what tonights numbers are. He slept for most of the time we were there, and worked himself into a frenzy a couple times (which led to signficant de-sats and the dreaded blue color we are not fans of). Some of this was gas, some of this was probably reflux, and some of it was probably attitude!? The strange thing is you can now tell pretty easily when this is going to happen. As he gets really upset he turns red. If this redness turns a bit more purple he’s starting down a bad path. Well since he has no oxygen reserves if he won’t relax and breath he will have a major de-sat. If his oxygenation falls below 60 he just doesn’t have enough to bring himself back so he has to have extra oxygen to help him. The challenge is knowing whether or not he has crossed the line before he settles down and starts breathing. A couple times today he needed extra oxygen. A couple times he did it himself. We are working on enrolling him in a new class entitled “no matter what, you still gotta breath”. Basically this class (which I hope you realize is a figment of my imagination) teaches kids that when you are passing gas, you still gotta breath. When you are upset and screaming, you still gotta breath. When you sleep, eat, poop, reflux, have a shirt pulled over your head, or any other thing you can think of, YOU STILL GOTTA BREATH! We are hoping he gets enrolled soon as there is nothing like early education!