Rachel had her sleep study follow-up today. I was expecting the doctor to tell us nothing is wrong and that we are crazy. Ok, maybe he wouldn't say we were crazy. So, Dr. K. likes to talk. Stephen and I have a really hard time getting a word in edgewise. We think maybe he is afraid of forgetting what he wanted to say and won't let us say anything until he is ready. But, Rachel loved his voice and was mesmerized so she was calm and quiet the whole appointment.
Basically, as we thought, Rachel has apnea. Dr. K told us that, for an adult, having 1 apnea episode an hour is bad. Rachel has 4.(something) episodes an hour where she either stops breathing or is breathing too shallowly. He said that because she has Ds that he can't hold her to the normal chart. She would desat to about 83% occasionally as well, which is not good. I also think that if the sleep study was done at our house and she slept the way she usually does, they would have found it to be even worse than that. Unfortunately, there is nothing we can really do. Her tonsils and adenoids are a normal size. Most of the time when kids have apnea, their tonsils and adenoids are very large and once they take them out, the kids do much better. So, surgery is not an option. There is also CPAP. He said that it would be impossible to get her to keep it on during the night so that is not an option either. All we can do is keep an eye on Rachel to see if it gets worse. We are going to have to have another sleep study done on her in 6 months (Stephen's turn!). Dr. K. said that he doesn't think she is in any urgent medical danger.
He is happy we are seeing Dr. H, the GI doc at Brenner's, and said that he will hopefully help get her reflux under control and maybe then we will see more of an improvement in her sleeping issues. I am not sure if it will help or not. When we hold her on our chests to rock her, she stops breathing and constantly is moving to keep her airway clear. She ends up tilting her head back with her mouth open and we have to hold her head in our hand to keep her from falling over out of our laps. She never used to do this, this is something that has developed since the sleep study and it makes me nervous. I asked him about her sleeping on her stomach too since she has found out how to do that. I was concerned about the oxygen saturation levels and if sleeping on her stomach would make it worse and lead to SIDS. He said there was no medical proof that the low oxygen levels would lead to a SIDS death.
So, there you have it. We have proof something is wrong but no real solution for it at this moment. We just hope she does grow out of it. I hate the wait and see approach.
P.S. - Rachel is now 15 pounds!
I hate that approach too! I hope they find a solution soon!
ReplyDeleteWell I'm glad you have an answer, but I wish there was a good solution! I know apnea is scary. My husband has it, but as he's lost weight it's gotten better. What I always do when he's sleeping and I notice him stop breathing is nudge him a bit to get him to roll over or move in some way and that usually prompts him to breathe quicker than he would have otherwise. Hang in there - she'll be just fine!
ReplyDeleteOh she is so sweet!
ReplyDeleteIn reference to your comment you left, we don't get any nursing care! Utah has no waivers that make it so he qualifies for medicaid under medical diagnosis. And my insurance only paid for 90 days of nursing after he was trached. So we get nothing. It really sucks.
Also with her apnea, if you are going to wait it out and do another sleep study in 6 months, you could always try just putting oxygen on her. It won't stop the apnea but it may help a little!
While you're waiting on a resolution to the apnea have you heard of the Angelcare monitor? I got it for my son who had apnea spells when he was born. It monitors movement in the crib and picks up even the shallowest breath. It might be something you want to consider to help you have peace of mind at night. Now we use it with our daughter and I cannot imagine having a baby without it.
ReplyDelete