Saturday, September 4, 2010


Just another quick update. We were shocked to have heard some preliminary results from Alex's sleep study the following day. His pulmonologist called to say the results determined that he has obstructive sleep apnea. He does fine until he gets into those really deep stages of sleep and then his sats drop. He keeps coming back up but they keep dropping and at one point dropped to the 70's. He does better with just a little bit of oxygen which is good but it doesn't take all the events entirely away as we know from his alarms at home every night. The good news is with his oxygen, he never lingers below the upper 80's/low 90's but now I understand that a lot of his waking at night is likely due to needing to catch that extra breath.

The next step is to have a consult with an ear, nose and throat specialist to determine if the obstruction is his tonsils or adenoids. I asked what the obstruction would be if it WASN'T those things, I couldn't think what else is there. Wrong question. We talked about since Alex has spina bifida and low muscle tone in areas, that this could be creating an issue with breathing during the deeper stages of sleep. His actual airway could be "floppy" or something like that. Well I won't go into the rest of the possibilities because that would just be getting way too ahead of ourselves. We'll do the ENT consult first and hoping its something relatively simple to treat or fix.

This was the article I found that gave some general information about this type of apnea in children.

We will also be meeting with the doctor from the sleep study to get all of the results. At this point we are thinking/hoping that his apnea is on the mild side but again we are just guessing because of what we see at home on the monitors and from what we can understand. The sleep study obviously has way more sophisticated equipment and you have no sense of all the data they are collecting.

Alex is such a trooper. He got more sleep than what we anticipated that night (we honestly didn't think he'd get much at all). Luckily he did sleep some but woke up A LOT and none too happy not to see his brother or his familiar surroundings every time he woke. He was however soooo good while getting all of those sensors and belts on which took over 30 minutes to get all hooked up and it was already past his bedtime. He was not as good keeping them on. (surprise, surprise). He managed to pull some of these off during the night (a couple of times) but he probably just wanted to give those ladies an excuse to keep coming in and visit the cute little boy again. He sure is a charmer!
Even when he comes home and we find him with his oxygen out of his nose AGAIN.
Somehow he managed to get part of the tape off and the other still stuck on his cheek
If you can see, the canula is hanging off to the right of his mouth. Not exactly where it needs to be.
close but not close enough. sigh.
and the look on his face: "why do you people keep bothering me?
 some people are trying to sleep you know."

yep he's a cutie even covered in baked beans

a cutie even when he thinks its fun to clap his hands as hard as possible
so that the juices from the baked beans go flying....every where.
Yes, it got much worse than this, just had to hide my camera soon after.

Ofcourse Alex couldn't have all the fun.
Nicholas has been doing "so big" everywhere
so this yummy lunch managed to double as a hair moisturizing treatment
(don't try this at home!)

This is what he does when he's all done or thinks he is anyway;
not dramatic or anything. 


Summers Family said...

What a cutie he is - they both are! We will be praying that the ENT has good news for you guys.

Alan said...

He's adorable, Holli ! Thank you for consistently posting these pics. . I love it!

ChaneyM said...

What cute pictures! You certainly have your hands full with those two during mealtimes!
My sister had tracheomalacia, floppy/weak airway, so I know what you are talking about. I will cross my fingers it is something simpler. I hope you can get into ENT soon!

Joanna (and David) said...

Oh my YES a trooper indeed! These little troopers of ours never cease to inspire me - they are such blessings. Praying for good help from the ENT docs and better sleep for your sweetie (and YOU). :)