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.
Today’s the day a room full of doctors and nurses will decide my sons future ❤️ hoping that they make the best decision for him and his quality of life, but also take into consideration that we are a family of 5 and that although I will do anything for my little soldier, I have 2 little girls who also need their mummies time and attention.
Feeling like a swan at the moment – looking ok on top of the water but frantically paddling away underneath, trying to keep moving forward. Im still processing the fact that Lennon’s colon has failed and trying to keep him going until GOS decide what to do with him, and then we get a letter from the neurologist diagnosing Autism, dystonia and choreoathetosis. Oh and she wants him to have a lumbar puncture to check for neurotransmitters 😔
Jeez, does this boy not have enough going on?! My brain feels fried.
I’m physically and emotionally drained. I honestly feel like I am responsible for keeping my son alive, and that’s a huge responsibility. I can’t just ‘clock off’ because I’m not coping and struggling. Usually when I feel like this I change something to improve the situation. But this is out of my hands, I can’t change anything. I am providing such a high level of care at the moment – yes he should really be in hospital, but that’s not practical or what’s best for him. We have 2 other children who need their mummy at home, not to mention that being in hospital is a logistical nightmare and requires a lot of help from a lot of other people. Whilst I’m sat in small hospital room still providing 24 hour care for my son because I’m the only one who knows how. I can’t even leave him to go to the toilet!
Lennon needs to be at home and going to school, he needs to have a some quality of life. He needs his family around him and for life to remain as normal as possible for as long as possible. He has no idea of what is going on his little body. He has no idea that his colon has failed and the implications of that – I’m not sure if that’s a good thing or a bad thing??
I will keep swimming, like I have for the last 10 years, because there is no alternative.
We returned to Great Ormond St on Thursday, originally to see a neurologist regarding Lennon’s recent seizures. But our nurse had seen the pictures from the contrast study the week before and discussed him with the doctors. They all agreed that he needed a phosphate wash out and a review with his gastro motility consultant. It turned into a really long day. The washout was awful, and proved what the contrasts photos showed – that Lennon’s colon has completely failed 😔 they said it is huge, full of air and fluid and can’t empty by itself as a result. At least we now know why he had been deteriorating so quickly.
So the outcome is we have to perform bowel washouts on Lennon at home twice a week until all his consultants at GOSH can meet up to decide what’s best for Lennon now. ( good luck with that, at the last count he had 15 🙈)
I must admit I am NOT looking forward to clearing out my sons bowel myself. This is something no mother should have to do to their child.
And If all of that wasn’t enough to process, we went into the neuro appointment and came out with yet another diagnosis – a movement disorder! She is also going to chase all the genetic study results and put him on the 100k study. And refer him back to the Metabolic team as their tests have improved over the years and may now show something not seen before( I’ve always believed has a metabolic condition)
My brain was absolutely frazzled by the time we arrived home and I am devastated for my little soldier ❤️
It so tough when he was doing so well this time last year, he was probably the wellest he has ever been.
He was last on TPN 6 years ago, and his bowel has done so well since then. We always knew it wouldn’t last and would struggle at some point, but that doesn’t make it any easier to digest 😔