Keep on going

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 😔 

Previous blog post – The seizure rollercoaster

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