Help for belle

[Guest guest]

belle is scheduled for an echocardiogram tomorrow in preparation for her

tonsil and adnoidectomy on April 27. They want to make sure her heart is okay

for the procedure. Meanwhile she has a cold and is dripping snot at a

prodigious rate and has had a fever, although that is coming down. She now has

thrush in her mouth, and is in a lot of pain as she's on her second bout of

antibiotics since February.

We had a sleep study which showed that she has obstructive sleep apnea (average

of 17 episodes an hour with O2 sats in the low 80s). Hence the desire to remove

extra large tonsils and adnoids. She has a tendency toward aspiration

pneumonia, having had three in the last nine months. The last one was in

February and she was hospitalized with pneumonia AND RSV.

She also has Velo pharyngeal insufficiency (VPI) and representative samples of

anything she eats comes up her nose. They're hoping to find out why this

happens and could, theoretically fix both problems at the same time, but at this

point I don't want any delays in getting the tonsils and adnoids out as the

oxygen deprivation for 12 hours a day while she's sleeping (she sleeps more than

the average kid 'cause the 02 deprivation makes her tired and sleepy) can and

DOES interfere with cognitive development.

She's on supplemental oxygen at night but how's that supposed to happen

effectively? Absolutely everything is a strangulation hazard. Even laying the

mask in the crib near her means that in about an hour, we go in and she's

wrapped up in the cord. Following the theory that oxygen has a molecular weight

greater than that of room air, I sewed an oxygen " bucket " with which we've lined

her pack and play and now pour the oxygen into the crib at 7 liters per hour.

She has a swallow study (VFSS) on May 12, as well as a scope up her nose

(picture wrestling a pissed off 2.5 year old and shoving something up her nose

-- not a happy prospect). I'm hoping this resolves the question of whether or

not she has a " sub something or other cleft pallet " which would be a fairly easy

surgical fix.

I called the Ped about the thrush. I've got her on huge quantities of

acidophilous, I have her on brain factors vitamins, and she also takes prevacid.

I called the hospital to let them know she's impaired with the cold, but I

REALLY want the echo to happen as I don't want any delays for the tonsil and

adnoidectomy. They're going to work on it.

Right now I'm so freaking stressed I could eat about 10 lbs of chocolate (that's

still an option I'm considering). I'd love to go slaughter an hour on the

eliptical until I'm so sweaty I could be calm again, but of course I can't make

that happen with belle too sick for child care and in

must-be-attached-to-mommy mode.

Do any of you have advice as to success rates on tonsil and andoidectomies. Did

this solve issues for you? Did any of your kids have VPI? Have any of you had

cognitive leaps after 02 issues were resolved? belle is the most delightful

child, and she's such a trouper through all these things, she handles them

better than I do. Can any of you think of advice I haven't thought to ask for?

HELP!!!

Please respond to grj@... so I get it on my phone throughout the day

and tomorrow when I'll be needing advice and encouragement. I'm so grateful for

all of you who are walking the path of raising our delightful kids with Downs

with me. Thank you.