On Wednesday, May 26, 2004, at 08:06 PM, Karen wrote: > ----- Original Message ----- > From: "Maya Nishikawa" >> There is one more concern that's popped up. Her oxygen >> sats have been dropping into the 70s and low 80s. >> She's usually in the 90s. We use an oximeter at night. >> She bounces back up, but she did this several times >> over the course of about 3 hours last night. Have any >> of you had this problem? The homecare nurse checked >> and her lungs are clear and there's no other obvious >> sign of what's causing the drop. > > The two things may be related. That is the desatting while sleeping > and the > problems eating. > > The small airways contribute to something called obstructive apnea - > Feeding and obstruction in the airways is not a good combination. Alex > used > to have to work so hard at just breathing alone that he could not > combine > drinking from a bottle and breathing together. It used up just too much > energy and he would tire withing a few minutes. He preferred breathing > to > eating - so he quit eating. > > We avoided the trach and went on C-PAP, which he didnt tolerate well. Obstructive apnea turned to be Keren's major problem. She had a sleep study when she was about 5 months old and immediately went on a C-PAP. Fortunately she has handled it very well, and hopefully will continue to until she's big enough that she outgrows the apnea. The other possibility may be surgery to open airways more or remove adenoids, but since she does well with the c-pap (and only has desat probs while sleeping), we aren't in a hurry to do surgery! She did have a jaw distraction at five months as well which helped a good deal. Loren (wife to Kraig, mom to Keren, T18, 20 mo. :) ) Southeast Michigan http://webpages.eng.wayne.edu/~ad6075 Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line