Yes, I know. It's been a while since I have blogged. It's summer time. That's the only excuse I have. Right now I'm sitting at TCH, which John has a bronchoscope and hearing test under anesthesia. The bronchoscope was supposed to be a month ago, but when we decided to add a hearing test to it, we postponed so we could do them all at the same time. Only one time under anesthesia is our motto. So I have a good 2 hours or so to kill.
I was reading back at the last post about his sleep study results and discovered that there have been some changes since I last wrote. After we saw the ENT and began capping him during all waking hours, he was doing great. We continued putting him to sleep at night with his trach open and no oxygen and he slept well. Then we saw the Pulmonologist. We found out something about the sleep study that we were not aware of. While his sleep apnea has greatly improved over time, he apparently had high levels of Carbon Dioxide for a large part of the study. Of course this is not good. The body needs to expel most of the Carbon Dioxide, otherwise, it can begin to affect other organs. She said it isn't any kind of structural problem that is causing the retention, but it's just that his brain is not telling him to take deep enough breaths to get rid of it. So she wants him back on the ventilator at night so it will help him to take deep enough breaths and expel the gas. This is obviously not what we wanted to hear. He had gone 6 months without a ventilator and we thought we were done with it for good. And here we are going back on it. What a pain.
The next week, we saw the sleep doctor/neurologist. Her feeling was that if we take the trach out now, he may do ok. But we don't know that for sure and it would be a risk. She feels like if we wait 1 or 2 more years, then his airway will grow and he may be ready to have it removed then. She asked us to just be patient. I feel like that is all we have done for the last 7 years, but if he's not ready to be without it, then we want what's best for him. We discussed the possibility of him using a bipap mask when he sleeps instead of the ventilator. If he were able to use that, then the trach could come out because he would still be getting support. However, there is no way in the world he will leave that thing on when he sleeps. We even met with a nurse to work on getting him used to wearing it. She gave us some tips to use to work on it at home. He will let me put it on top of his head, but as soon as I get it to his nose, he is ripping it off. I just don't see that happening, and honestly, I think we are better off just using the ventilator. If we went to bipap, we would likely lose our night time nursing, which means I will be up and down all night and wouldn't get much sleep.
Last night, I took John to his new school to meet his new life skills teacher. I have finally accepted that he has to go to this school. I was feeling a little better about it, until I went to this orientation last night. I discovered that his new class will have 12 kids in it to start the year, with 1 teacher and 3 paraprofessionals. That is more kids than his class had last year with the same amount of adults. I can't imagine why they moved him from the school he was at to alleviate some of the crowding problems, only to put him in a school where his class size is bigger. I am going to meet with the nurse, teacher and teacher's aides on Friday to go over John's care with them and make sure everyone is on the same page. But I get the impression that the teacher is going to be a bit overwhelmed. I am worried about his health and personal care, of course, but now I'm beginning to worry even more that the progress he made last year will suffer this year. I will just have to keep praying and trust God that he will take care of everything.
I wanted to leave you with a picture of him in his extra special PJ's that Texas Children's has kids wear when they go into surgery, but my iPad won't let me. So much for this Apple is superior garbage.
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