Today was our appointment with Micah's Pulmonologist. It lasted TWO long hours. Shesh. Anyway here is what he told me.
Dr. S is 90% certain that Micah has CCHS (central congenital hypoventilation syndrome). Check out this website to find out more about CCHS. He also thinks that Micah getting RSV saved his life. If Micah would not of gotten RSV we would not of found out that he desats while sleeping, if he wouldn't of desated while sleeping we would of not found out that he had neuroblastoma (is common with CCHS) and poor swallowing abilities (related to cchs) and silent reflux( also related to CCHS). Dr S said he thinks that either Micah would of ended up as a SIDS baby or else we most likely wouldn't of caught the neuroblastoma as early as we did which in turn it would of most likely spread with a poor outcome. How crazy is this? For a long time it was hard for me to say that I was thankful that my baby got RSV, that he got sick and was in the hospital for 2 weeks, but now I think i am at the point where I can say Praise God for RSV!
So where do we go from here now that he is 90% sure it's CCHS?
Micah will be having another sleep study (this one overnight the last one was just a nap study)
Micah will be having another swallow study done.
Micah had bloodwork taken today for the genetic test that diagnoses CCHS. The results of this test won't be back for at least a month.
Dr. S thinks that most likely Micah will need to be seen at Rush Medical Center in Chicago one of the very very few places in the world that studies, researches, and specializes in CCHS. So I guess in the next two months sometime we will most likely be taking a trip up to the Windy City to meet with the dr's there and see what they think and what they think we should do next.
As of right now we have no idea what degree of CCHS Micah has (if this is for sure what he has). We are thinking, praying, and hoping that it's just a very mild form and can continue to be controlled with just supplemental O2 through his nasal cannula and through his c/a o2 monitor. All of this I will be able to share at a later date when we know more.
Please continue to pray for our little man. He is such a fighter!!! He is a gift from God and such a blessing and joy to be around!
Otherwise things with us are great. We are moving to Minnesota in 2 months and have ALOT to do before we move. We are looking forward to this new journey and experience that moving will bring. (not looking forward to the cold and snow though...)
Noah is doing great. He is such a ham and so sweet and flirts with EVERYONE! He is smart and funny. He is pretty much running everywhere he goes now and just growing so fast.
Seth is finally done with classes for the year!!! And I am just running around like crazy feeling like a chicken with it's head cut off. (yes I went there). But really i'm doing great! Looking forward to a spa day thanks to some WONDERFUL friends who got me a gift card to a spa!! Thank you thank you thank you!!!!