The Latest

Thanks for being patient for the update...I went to lay down when Tom got home from work yesterday and fell asleep...and just woke up! Tired Mommy:) Sweet Daddy to let me do that!

Here's the latest...

On the way out of town to Houston I stopped to pick up the sleep study report. It said "normal". What?!?! I had this horrible feeling that we were driving all that way to see a doctor who would say, "Well, everything looks fine, go home." That was not the case.

Apparently, the sleep study that was done here in Dallas did not look at the one big thing they think is wrong. The new doctor was not at all surprised that the report she read was "normal", as the things they were testing would be for the most common "sleep problems" in pediatrics. However, they do not think that is what is going on with Rebecca. They think her sleep difficulties are a direct result of her mitochondrial disease and its effects, so that study would not pick up on those. Long story short, we will need to do another sleep study in Houston so they can look at carbon dioxide levels. Their theory is that her airway is collapsing (due to weakness and low tone) at night and trapping CO2 in her body. It would explain lots of her symptoms. They also wanted us to see and ENT to make sure her adenoids and tonsils were not the problem blocking her airway. We did that yesterday and those were both fine. The doctor said that she would be very hesitant to remove those, even if they were large, as they may be the only thing structurally holding her airway open right now. Luckily, they were fine and so we don't even have to worry about that.

They also wanted us to put her on more oxygen at night as well as throughout the day. We will use it anytime we leave the house, during naps, and at home if she is having a hard day. She is allowed to be off of it if she is playing at home. This will be a big change. It already has been. I am now hauling three kids and an oxygen tank around town. We went to the doctor and the store yesterday, and it seemed like we added three more kids to the mix just trying to keep up with it all! I know I'll get used to it, but oh my...it was hard:) I was sweating, sweating, sweating by the time we finished all of that.

The doctor talked about a tracheotomy (something our mito doc had mentioned as a possibility) if her airway is collapsing and if it gets worse. She REALLY wants to wait as long as possible, of course, before we attempt this. She explained that kids with a trach are much more prone to infection and kids with mitochondrial disease have such a hard time fighting off infection, that when you combine these, it can be disastrous. Of course, we are happy that is not in consideration right now. Pray that it will never be a decision we are forced to make.

So, for now we are to use the oxygen more and return to Houston in the next week or two for another sleep study.

There's the latest:)

Be Blessed!
Joy