Master S is in theatre. The bravest boy I know. He was soothing himself by repeating over and over "I'll be asleep and then I will wake up, I'll be asleep and then I will wake up.
Bloods still at the lab. Over 100 apnoea's in a 9 hour period. Oxygen saturations dropping to 60. He has no appetite and is sleepy in the day. Airways obstructing, hence tonsillectomy and adenoidectomy.
Very interesting reading here on page 35 discussing obstructive airways in Beckwith-Wiedemann Syndrome.
I'm not feeling like vomiting now. They will come soon to the parents lounge to tell me he is in recovery. He is so brave. Minky and Extra and Reco and Mr Whoo were able to accompany him into theatre.
I think I may right a post about hospital stay hints and tips. There's lots to know... Especially that of how great the weight loss program is here. It's called stress.
Love Rach x x
It's ten minutes later. I'm not feeling brave. I feel like swearing which reminds me of the movie the kings speech. I worry. What if he bleeds out. What if something goes wrong. What if the bloods come back and his afp is through the roof. What if his heart dropping to 47 means he does have a cardiomegaly like 35 percent of Beckwith kids and when I have requested they check his heart and don't listen to me shit will hit the fan. If I didn't video his apnoea they would not have believed me.
They didn't anyway. Then they saw the video and agreed whole heartedly. Shit. He's still in theatre. My beautiful beautiful boy
We are in a new ward now. My boy is sleeping. Tonsils were huge and sent to pathology for screening. Adenoids stayed in, not as large as anticipated.
We are monitoring his heart and breathing, new nurses noted my concern of heart abnormality.