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kirafaesmom
04-29-2009, 08:23 PM
We just got back from the sleep specialist/pulmo. We have a sleep study scheduled for the 12th of May. The office is looking for cancellations to get us in sooner if at all possible. He wants to see us within a week of the sleep study with the possibility of foregoing that appt for being admitted. He seems to be leaning fairly strongly to her having issues with hypoventilation. We've already covered the possibility of a vent at night. He was actually rather surprised and pleased that she's not on cont. oxygen support given her overall breathing patterns. It would seem that even her daytime breathing is rather shallow. So, now it's the wait and see what comes of the sleep study. At least for that one we get to go to the Marriott downtown. Not that I'll get anymore sleep, but it will be more comfortable and they'll feed me breakfast in the morning!

Niff
04-30-2009, 07:18 AM
Yay for breakfast. :)

Sounds like things are in the works and I hope you get good news from the sleep study.

Did the pulmo say anything about Kira's pneumonia? How's she feeling?

suzanne2545
04-30-2009, 07:30 AM
Goodness. Sounds like you have lots of new things to wrap your head around. I hope they get you in sooner.

Nate's Ma
04-30-2009, 07:42 AM
Don't ya just love that breakfast!!!!!!!!

My little figther
04-30-2009, 07:55 AM
It seems that things will go someplace - I hope you will have ok news - Yeah for the breakfast - it sometimes nice to be served and not have to cook anything
Michelle

JWorthington
04-30-2009, 08:36 AM
Hope they can get you in sooner. I love it one someone else cooks breakfast, that sounds good!

alizesmom
04-30-2009, 11:12 AM
:hug: Karen

kirafaesmom
04-30-2009, 12:19 PM
Yay for breakfast. :)

Sounds like things are in the works and I hope you get good news from the sleep study.

Did the pulmo say anything about Kira's pneumonia? How's she feeling?
I asked him about the pneumonia, and his response really pointed out the problems with her breathing patterns. He said that it was very difficult to tell without an xray because she breathes so shallowly that you can't hear. This has been a problem all of Kira's life. The seizures seem to be settling down, so I'm hoping that Tuesday night's round of horror was just a "blip".

alizesmom
05-01-2009, 07:35 AM
I asked him about the pneumonia, and his response really pointed out the problems with her breathing patterns. He said that it was very difficult to tell without an xray because she breathes so shallowly that you can't hear. This has been a problem all of Kira's life. The seizures seem to be settling down, so I'm hoping that Tuesday night's round of horror was just a "blip".

Just a thought but did he say that the pneumonia's might settle down once you get deeper breathing? :hug: Karen

kirafaesmom
05-01-2009, 01:44 PM
Hi Karen; Yes.....he feels that she has amazingly strong, healthy lungs considering her hypoventilation. He was VERY surprised she wasn't on continous oxygen even at this point. The "theory" being that breathing more deeply will keep her lungs even clearer and prevent the pneumonias. We've already dealt with a large part of them with the seperation surgery, but perhaps dealing with the hypoventilation will helps us reduce her risk of pneumonia even more.