Heartbroken for my little soldier. We had an MDT (multi team meeting) Great Ormond St yesterday. Obviously I know Lennon inside out, and I am an expert in every single diagnosis he has and his complex medical. But it still has hit me really hard.
He is under 16 of the specialist teams there, and although they didn’t all attend, the room was full with some people standing. The outcome of the meeting was that they will put him on the surgery list for an ileostomy, to bypass the defunct colon. This will mean he will have 3 stomas all constantly hooked up to something (feed and drainage) and in the mean time they are going to try Botox in the muscles at the end of his colon and put a balloon in his bottom to test the muscles.
The one big plus is that they think once the lower GI problems have been sorted, his upper GI problems will likely improve, which could result in him having feed back into his stomach!
His movements have dramatically increased over the last few weeks (it takes me almost an hour to get him washed and dressed in the mornings and evenings) since I been performing the bowel washouts on him, which we are sure is causing the weight loss. The Neuro said it is because his gut is causing him constant pain. She also thinks he has a rare Neuro motility disorder and will perform a lumber puncture to check 😢
Suddenly the last 10 years have hit me head on. We have always agreed to do anything at home just to stay out of hospital and attempt to give Lennon the best quality of life possible. To extent where now we effectively run an HDU from our home. I’m starting to think that we have taken on too much and it’s breaking my heart 💔 but what else can we do?? I won’t ever give up on my little boy, it’s not an option. But some things do need to change. We need A LOT more help than what we are currently getting, and I need more emotional support as currently I’m only getting that from Ian, and he is just as exhausted as me!
I’m hoping that we don’t have to wait too long for the Botox, and that it is the magic cure that Lennon’s colon needs. And I am so grateful that Lennon has an amazing medical team, at our local and at Great Ormond St. And that they always take my views and knowledge of Lennon on board when they are making decisions.