We had a fabulous day together yesterday. Skye came home mid-morning and he was on pretty good form. The four of us actually sat down together at the table for lunch for the first time in months, which felt like a real treat. Albeit for 5 minutes, before Jesse declared that he had finished! Skye had half a thumb nail of potato and a few sips of Paediasure Milkshake - big meal for him!
In the afternoon we set off to watch the Grease rehearsal and it was lovely to catch up with friends and for Skye to do something completely different. He was really engaged in, not only watching the show, but also running a stall, selling sweets on behalf of his Charity. Soon to be officially announced! We had to be back at the hospital for 5.30pm, so Jesse went off with Granny while the 3 of us went back to the JR.
We had a really fun evening, with Skye being on brilliant form, cracking jokes, being witty and laughing until he thought his sides would split. He was laughing so much that he had tears rolling down his cheeks and asked Sally, "Mummy, will my sides actually split?" It was so heartening to see! He drifted off to sleep and Sally and I sat down to watch a programme on TV while he slept beside us. Once again, a strange sense of normality, despite being the first time we have been able to do that. The only interruption to the evening was a visit from the Registrar to go through today's procedure and to sign consent forms. I asked my usual 101 questions and then when I got back into the room to debrief Sally, realise that I forgot to ask question 102!
This morning was a completely different affair. Skye was 1st on the list. The anaesthetist came in just before 8am to do his pre-op chat, followed closely by the surgeon. Nice South African chap who heads off shortly to take up a consultancy at Red Cross Children's Hospital in Cape Town. Skye again showed his unbelievable maturity through the whole process, asking questions, all valid and coherent. In the anaesthetic room he took out his 'pipes' decided that they should use the white one because the anaesthetic was white, sat calmly on Sally's lap until the last moment when the fuzziness starts and then he always has a mild panic before he goes limp. As usual I can't hold back a few tears and we head off back to his room to be called to recovery.
Quick and simple op but again with management implications going forward, but, we are assured, for the best!
Insertion of a PEG: pump stomach full of air, send camera down the throat and into the stomach, shine light through the wall of the stomach upper left abdomen, depress stomach from the outside, camera checks that they have the right spot, make incision in stomach wall, muscle and skin, feed the pipe from inside to out, small bubble/balloon prevents pipe coming all the way out, place clamp on external aspect of the pipe, add the connectors, job done!
Skye was clearly in discomfort which was eventually sorted with yet more drugs. Amazing how quickly they work when they go through his line. Discharged from recovery just before noon and we spent a quiet afternoon just lolling about in his room, chatting.
As he drifted off to sleep this evening, in a half asleep, half awake state, his little hand came searching for comfort, just gently searching for a hand to hold, it is an incredibly tender moment which is difficult to put into words. Every now and again he gives it a gentle squeeze or a little movement of his fingers just to check it is still there. His strength, his fortitude, and his tolerance for all that we are putting him through, is truly awe inspiring. Getting his nutrition sorted is a key step on the road to recovery so we are hoping that the PEG proves to be successful.