Not sure where to even start I have been given information over load today....
I guess I will start where the result info started for us, but I should warn you that this might be information overload. I need to document this for my own memory.
Tuesday morning I put a call in to Dr. McClay our ENT to see if results where back. I knew he was in surgery that day, but thought I would give it a try. Lisa his nurse called back that afternoon and read what she could from the results. She asked for my take on how he did, which was "pretty good, but I have NO idea there wasn't any info in my room". She said the sleep doc reported loud breathing, restlessness, jerking awake, and to wait on decannulation and repeat sleep study in 6 months!!! She said there was a lot more info on there, but she couldn't read the charts. I about died when she said 6 months. That is a long time!
We sent off and email to Dr. McClay explaining what Lisa told us and pretty much asking "what in the world happened in there". We got this e-mail back from McClay...
"It looks like there are significant central apnea's, meaning the brain stops for some reason, and obstructive apnea's, meaning something is blocking the airway. I'll need to talk with the sleep doc who read it and your pulmonary doc. We don't have to wait 6 months to get another sleep study. We can do it in a few weeks, but maybe we should not decannulate on Thursday until I can see him again."
To clarify Central apnea means the the brain stops sending the message to your muscles to breathe. This is a neurological problem. Obstructive apnea means that there is something blocking the airway that doesn't allow the air to get all the way to his lungs.
So from this we pretty much freaked out. Using the word significant when it came to a neurological problem freaked me out and hello we have put Carter through the ringer the last couple months to get him a perfect airway and now your telling me there is still something wrong with it!!!! To say the least yesterday was not a good day.
Early this morning we had a conference call with Dr. McClay to hear more. He started the conversation saying he was confused. Not too comforting, but Dr. McClay isn't one for comforting. He went on to tell us that we all have apnea and a normal range of apnea episodes is to have 2-4 every sleep cycle. Meaning that in 8 hours of sleep you are ok to have anywhere from 15-25 apnea episodes. In 4 hours Carter had 96!!! Do you see where the significant word came from? He couldn't give us much information on why he would have the Central apnea episodes, and was confused why he would have the obstructive. He texted Dr. Gelfand our Pulmonary doc and told him he needed to get us in right away to figure it out. I was so glad he took care of getting us in because Gelfand is a busy guy and is not easy to get into.
So this afternoon we met with Dr. Gelfand and his sleep doctor to go over the results. When Gelfand came in he told us it was Bogus! He pretty much said he was set up to fail. Carter had never been capped until mid November. Two weeks before the sleep study he had his tonsils and adenoids removed, which is tough on any kiddo, but especially one with Carter's history. Micro Preemies also tend to take longer for swelling to go down, which has always been the case for Carter. So with that said he had one good week where he still didn't feel too hot from the virus of being capped. The odds definitely weren't on his side.
The sleep doc told us that he had no apnea during the study when he wasn't capped. This was great news and pretty much meant that the obstructive apnea was also causing the central apnea. The doc said that usually kids that had that severe of apnea (96 episodes severe) had clear neurological issues in their everyday life. We have never seen anything neurologically off with Carter and no doctor has ever expressed concern. He didn't feel any need to do a MRI to check out his brain at this time unless we find out that Carter has bilateral paralyzed vocal chords, because that would mean the brain wasn't sending the message. We are almost positive he just has the left side paralyzed.
There is so much more to this, but it is all kinda scary stuff that we don't need to worry about right now. Overall the doctors think that the obstructions are
1. Swelling still from Tonsil and Adenoids
2. The trach itself. It's pretty much a straw in the middle of his airway taking up space that he can't breathe out of when capped.
3. His paralyzed vocal chord. Since it doesn't move it becomes obstructive.
So the plan now is to give the swelling 4-6 more weeks to go down. The night of the sleep study Carter will wear a smaller size trach so it doesn't take up as much space. The vocal chords are something he will have to learn to deal with. If all goes well on that study we will decannulate then.
Two years ago we were praying for a Christmas miracle that our sweet baby boy born way too early would be able to live and be with us. We prayed so hard that we would just be able to raise him. We didn't care under what circumstances. Although this trach business has not been my favorite thing considering his odds in the beginning it has been incredible.
So although we didn't get our Christmas miracle this year it's hard to be too disappointed about it when we think back to the one we received two years ago.
I have wished so many times over the past two years that I could take the pain away, that I could endure the surgeries, struggles, and all the he has to go through. I wished it could be me not him. A while ago when I was having one of those wishing moments I had the thought that if my Heavenly Father wanted me to go through what Carter had it could have been that way. But he didn't. He needed Carter to go through it. I know that Carter has to go through these trials so that I can learn from them. So that someday he can learn from them. And if he is going to have to endure through them I better do all that I can to learn what I am supposed to so they were for a reason. A good reason. I haven't learned all that I need to learn, but I can promise that I am doing my everything I can to continue to learn.