Right, apologies for venting, but I need to do it somewhere otherwise I’m going to end up exploding at someone at work or something.
My DD is 2 and a few months and has obstructive sleep apnoea. In her case, basically her tonsils and adenoids have grown faster than her airway, so they block her breathing. When she is awake, she is constantly slightly out of breath and sounds a bit like darth Vader, but the real problems come at night.
When she is asleep, she cannot easily breath round the obstruction. She fights for every breath, with her whole body twitching and fighting until she manages to gasp one in. Sometimes it is as much as 45 seconds between successful breaths. Her lips start to look blue. Sometimes if I hold her upright she manages to breath every five seconds or so. It makes no difference what position she lies in (it used to, when this all started a year ago, but it’s been getting steadily worse ever since). When she finally manages to breath, she gasps and gags on her tonsils. The last few nights she has gagged so hard she has been sick.
She can no longer eat solid food as she gags on it, and is mostly surviving on yoghurt and puréed fruit. She hates eating. I still breastfeed her as it’s the one way of getting calories into her that she cooperates with. She has gained almost no weight in the last nine months and has dropped from being just above 50th centile weight to being 2nd centile.
We saw a consultant two months ago, after waiting for 8 months to see him. He said she needed surgery urgently to correct the problem. They still haven’t given us a date.
I’m desperately upset and exhausted. I have to stay awake most of the night because she is so exhausted she no longer wakes up when she is sick and I think she will choke in her sleep. My DH took her out this morning so I could get some sleep (he does this weekend mornings and often during the day on weekends or in the evening on weekdays if he can), I can’t sleep because I’m so upset.
I just need some handholding really. I feel like I’m falling apart and nobody will do anything to let my little girl get some sleep!