Tuesday, July 10, 2012

I love this kid.

Found this when I was cleaning KayTar's room...

Sunday, July 08, 2012

Summer so far...

Since summer started on June 8th (one month ago):

We watched The Muppets outside in the park with friends.
Josh and BubTar had a week of Twilight Camp for scouts, while KayTar and I had girls' nights for a week!

BubTar had 3 weeks of GT camp where he learned about and made different types of art.

We had 2 game nights with friends.

Josh and I went out to play Bingo at a bar with friends (and Josh got a Bingo!).
The boys spent 3 days camping at the scout ranch.

KayTar and I went ice skating with friends.

KayTar and I had friends over for movie night to watch The Princess Bride.
We all went bowling with friends and BubTar was such a good sport (not his usual reaction to bowling).

Josh and I went out to Kemah to eat, watch fireworks, and ride rides with our best friends for the 4th.

We went to a minor league baseball game with friends. After the game we heard a symphony concert and watched fireworks. It was KayTar's first baseball game, her first time on a carousel, and her first time being up past midnight for fun reasons. She was SO excited about the fireworks and gasped/exclaimed something after every one of them. She also shouted "OH MY GOSH, THIS IS THE BEST NIGHT OF MY LIFE! WOOOOHOOOOOOO!"

And there has been a lot of swimming, of course!

I'd say we are having a pretty awesome summer so far! :)

Sunday, July 01, 2012

Sleep Study #2 Results

We got the results of KayTar's sleep study earlier this week, but we don't know what to do with them! We're having some issues being turfed between the pulmonologist/sleep doc and the neurologist. The main problem is that she had 31 central apneas (where the brain fails to signal the body to breathe) that lasted up to 30 seconds and were associated with desaturations to the mid/low 80s. Also, her oxygen saturation was only 95% when awake and 93-94% when asleep, which is lower than I'd like even if it is not hugely abnormal. Her lowest oxygen saturation was 83% with 23 desaturations of 3% or more. Other subtle abnormalities were her sleep efficiency, 71.1%, 111 arousals, and she spent a tiny amount of time with her EtCO2 above 50. Her AHI/CAI are 4.5 overall, but 5.7 in NREM.

I'm a little frustrated right now from the lack of a response I'm getting from her physicians, because I'm a bit concerned about the results of this study. 6 months ago, her study looked significantly better. She had only 15 central apneas that were only 8-16 seconds in duration and her oxygen levels never dropped below 91%. Her average oxygen saturation was 97%. Her AHI was 2.0. All of it was worse this time and it has only been 6 months since the last study. She is also "forgetting" to breathe still during the day and we have to remind her. It doesn't really make sense to me that someone can forget to breathe, but when she is concentrating on something, she does. I wonder if it is related to the central apneas.

Between the daytime symptoms she has, the "forgetting" to breathe, the lower average oxygen levels overall, the increased and prolonged central apneas, and the desaturations...I am really hoping that the pulmonologist will recommend treatment this time, at least on a trial basis. I also really want to be able to monitor her oxygen levels at home with a real pulse oximeter. I know other patients of our pulmonologist who have been treated with fewer significant issues than KayTar is exhibiting, so I hope that once we are really able to connect with her and review all of this (soon, I hope!), she will have good suggestions for what to do next!