Thursday, October 23, 2008

Finally, an answer. Too bad it is the wrong one.....

So - I finally had the follow-up appointment for Louisa's sleep study yesterday. I was fully prepared to be told that she just "wasn't a sleeper" and that nothing was wrong with her, we would just have to suck it up. That was not the answer I got - in fact, it was far from it.

The night we did the sleep study, they tracked her over a 5 hour period of time. In that time period, she awakened 32 times, she also is not getting any of the stage 4 sleep (which is the deep sleep in which your body resets). Most alarming though, she had 24 episodes of central apnea. Before yesterday, I had no idea what that meant. Now, I have read every article, info, etc. about it. What happens is that your brain just flat out refuses to tell your body to breathe - resulting in apnea, the absence of breathing. This is not like the obstructive sleep apnea in which you can remove tonsils and adenoids to help open the airway - her brain is not telling her body to do something that she should. In the meantime, her oxygen saturation level is dropping. She begins breathing again (obviously), and this is possibly why so many times she wakes in the middle of the night screaming bloody murder - because she is almost choking to death.

So, what to do. The sleep study doctors believe (90%) that this central sleep apnea is related to her gastroesophogeal reflux. So - we are going to be following up with the pediatric gastroenterologist for more info about her reflux. We are also going to do an MRI of her brain to make sure that there are no neurological reasons why her brain is telling her not to breathe.

If the day wasn't already good enough - we had to go to the ENT doctor because her ears had been draining for a while and my husband ENT thought we should probably have her tubes checked out. So, of course - one of the tubes that she just had placed in April is out and she has a raging ear infection. This was just the best day ever.

So, now I am patiently waiting - which for any of you that know me, I am not patient, and I don't like to wait. So, this is no good for me. Last night, I laid awake in bed wondering, "is my child breathing right now, or not." I ask everyone to keep their fingers crossed for Lula. I will try and keep everyone up to date on how everything is going.

Now for the bit of good news - I am convinced that since she is not sleeping, and now I know for sure - that it HAS to be an explanation for her odd behavior. This has to be the reason that she is soooooo hyperactive, irritable, fussy, sensitive and moody. So, I am looking forward to her being able to sleep good at night. I cannot imagine how I would be if I was so sleep deprived. Poor thing.

7 comments:

Carol said...

OMG- that is so scarey. Please keep us posted- Love ya'll!!

pmginn said...

I'll do better than keep my fingers crossed for Lula - I'll keep her in my prayers. Yep, if I don't get my sleep - especially several nights in a row - I'm pretty darn cranky too!

Julie, Mitch & Chapman said...

Oh, Amy, I have been wondering if you had found anything out. I am defintely going to be praying for her and for answers! Poor little thing. She is so sweet! Love you guys.

Andy, Katie, and Leighton said...

2I am so sorry! I know this was hard news to hear! I will be praying for you and her. Keep us posted.

The Milan Family said...

amy, i am praying for your family. Poor baby Lula. Everything will be ok though.

Tori Hayes said...

Amy,
WE will be praying for Louisa. I can't imagine how scary this is. I will pray also for you and Byron for God to comfort you during this crazy time.

Rebecca said...

Oh Amy I am so sorry to hear that. I know how worried you must be. We will keep praying for her and you. Please keep us up to date on this.