Haven's surgery went very well on her toes. She made it through with no breathing issues and no crazy reactions to the anesthesia. We met with the anesthesiologist for a long time on Monday before the surgery to review everything about Haven. She had done some reading on Haven - said there was a pretty good novel of medical paperwork. We discussed the possibility of us going home and at the time she said it had been requested that Haven be admitted for 2 days after surgery to be monitored.
Talking with her was very easy and we asked since the surgery was not going to be that long if we could just do the "mask" instead of anesthesia through the port. She agreed but would have the port ready to be accessed if necessary. Haven did so well, they didn't have to access the port and no intubation. She came out of surgery with little effects from the anesthesia and was ready to go within 2 hours. So we were released! NO OVERNIGHT STAY!!! YEAH!!!
We have battled a few fevers over the past couple of days since the surgery but she keeps breaking them. Last night we unwrapped the toes - she was not happy but didn't freak out like I thought she would. The biggest thing is she has serious OCD of the feet. She cleans them constantly so to have them bloody and yucky drove her insane. We wanted to let them air out before putting peroxide on them. So for about 2 hours she babied them telling them not to worry that she would clean them soon.
We had her walk a bit last night and the toes didn't seem to bother her. If I had to pick a positive about ROHHAD - I would say the best thing we've gotten out of this disease is the decreased sensitivity to pain. What would probably make me cry like a baby doesn't even bother her.
Thank you to everyone for checking up on her and wishing her well. She is as usual awesome about her doctors and medications. We are enjoying the lack of at home medications right now for a few more weeks. We only have to take Amlodipine and Bactrim right now and it's very nice.
We'll be meeting up with Oncology after a 2 week recovery to review what we need to do next!
Love to all