Sleep Study Results

This afternoon I took Bryce into the pulmonologist to get the results of his sleep study. I received a lot of information, but in a nutshell the results were not good. They weren't totally surprising considering we have known for a few months that something was not right with his breathing, but it was still hard to hear them and to learn what they could mean for Bryce in the future.

Dr. Woodword is an amazing Dr. He came into the office today and sat down and really talked with me. He took time to explain things and to answer my questions. They had squeezed us in for the appointment, but it felt like we were the only people he was seeing today. Anyway, he came into the office and explained that he wanted to give us the results in person instead of over the phone because they are pretty serious and he would feel awkward telling me over the phone. He went on to say that there were multiple things that Bryce had been tested for during the study, but the result that bothered him the most was Bryce's average oxygen level throughout the night. Normal is of course 100% with some lower dips into the 90's. 90 is kind of the line where it begins to be really serious. Bryce's average for the night was 90 with many dips into the 80's. He said that one main problem with a person not getting enough oxygen is that the body compensates for this by taking more breathes and breathing more rapidly. The problem with this is that when you breathe more heavily, your heart starts beating faster as well. The heart is a muscle, and as with any other muscle in our body, when the heart is worked a lot it becomes hard and then is not able to pump the blood correctly. So if Bryce's breathing issues (which the pulmonologist feels may have been going on for a while) were left alone for long, then he could have some very severe heart issues as well.

Then we discussed the other results including why his oxygen flow is low. There were a couple of reasons, but the main one, and the one that bothers me the most...and surprises me the least...was described to me like this: breathing seems to be an automatic thing. We don't think about it, we just do it. Well, the reason it is automatic, is because the brain tells the lungs to move in and out, etc. Although we don't have to think it to make it happen, the brain has to get the message to the lungs or they won't work. For Bryce, the transmission from his brain to his lungs is not working right! The message to breathe is not getting through the way it is suppose to! This has always been one of my biggest fears and unbelievably it is happening. I say that it doesn't surprise me because this is exactly what has happened from the beginning, with his walking, talking, sitting muscles and more recently with his sucking, chewing, and swallowing muscles. He can no longer walk, crawl, talk, suck, eat, etc. Is it going to get to the point that my baby boy can no longer breathe or do all of the other necessary things to survive in this world without being constantly hooked up to machines? The one thing that we know about his illness is that his brain works fine, his muscles work fine, it is the connection between the two that is the problem due to the loss of mylin. What we do not know is exactly WHY or how to stop or fix it!!!

I often cry on the way home from his appointments and this one was no exception! Luckily I was talking with my sister on the phone a good part of the way home and that helped me keep it together, but then when I was alone in the car with my two sleeping babies, I couldn't keep the tears from coming. I just kept thinking, "I am losing my son. We are loosing him and I don't know what to do about it." I keep praying and searching and continue to keep the hope that someone will find something to help cure the problem with the mylin, but news like this is so hard to deal with! Luckily I have other responsibilities and children with needs that keep me busy.

So if the insurance approves it, Bryce will be adding a cough assist machine, a suction machine, and a BiPAP machine to his ever growing list of assistive devises. I am afraid that he is not going to like using them, but hopefully they will help with his breathing issues. One good note that came from the appointment though is that he is up to 25 lbs! I am thankful for all of the medical equipment that we have that is helping to keep Bryce with us as long as possible!