Annie's ENT Appointment

We met with the ENT for the first time today. He said Annie's soft tissue neck x-ray showed mild enlargement of her adenoids. He wasn't able to get the sleep study report before our appointment, but after telling him some of the statistics from it, he agreed that Annie would most likely benefit from a tonsilectomy/adenoidectomy, but doesn't want to schedule anything yet, until he sees the sleep study himself. Fortunately, he's willing to combine his surgery with her ankle surgery, so that will be nice.

His concern is that Annie's space between the back of her tongue and the back of her throat is much smaller than a typical child's. So he's not certain that the tonsilectomy/adenoidectomy will resolve her sleep apnea, but said it might open things up a little more for her. Also because of Annie's low muscle tone in her throat, he says surgery might not completely resolve the apnea. In that case he said a trach might be an option, but we've always decided against giving Annie a trach. Her level of care and quality of life would dramatically change, and not just for her, but for the whole family. Our goal has always been to keep Annie happy and comfortable and able to enjoy her life to the fullest, and we feel a trach would limit her abilities to meet that goal.

On the other hand, the doctor said that if we don't treat her sleep apnea, Annie would eventually experience heart failure, working so hard to get oxygen to her body. So for now, we're really praying that the tonsilectomy/adenoidectomy will help at least reduce the number of sleep apnea episodes she has each night. We also might consider putting her on C-PAP, but that has its own set of challenges as well with all the vomiting she does at night, as well as her need to suck on a binky. We are also having a hard enough time just keeping an oxygen cannula on her at night and don't think she'd do any better with a C-PAP mask. I guess we'll cross that bridge when we get there, once we see how successful the tonsilectomy/adenoidectomy is.


After Annie's ENT appointment we went to pick up Annie's new knee brace, but because her leg muscles are so atrophied and her joints are the largest parts of her legs, they couldn't even get the new brace on her. But after they saw that Annie's kneecap is out of place again--this time to the top--they found a completely different brace that will help hold the kneecap down in place. The problem is that we can't get her kneecap back into place. So she's wearing the new brace to prevent her kneecap from moving around, although her kneecap is still up towards her thigh. We're going back to the orthopedist next week to address this issue again. We're really just hoping and praying that they doctor will operate on her knee when she has her ankle surgery and tonsilectomy/adenoidectomy, and then we can stop worrying about her kneecap dislocating and the pain it's giving her.