Gosh, it’s been a while since I updated. Honestly I’ve been wanting to for a while, but we have been struggling a bit. This last 5 months (wow!) has completely flown by - we have fit a lot in, hospitals, operation, charity... It’s all been a bit overwhelming.
Well, Dregan didn't have his PEG after my last post, we had problems with the hospital when he was admitted, so he went back at the beginning of May - I won't go into details of the op. He was poorly, we were there for 2 weeks with post-operative problems, but now, some months later, he is doing well.
He has put on weight (so much that many of his clothes no longer fit, so we need to replace them, haha!) He is healthier in himself in that he isn't struggling at feed times, and hasn't had **that** many poorly days. He seems to have more energy, and isn't falling asleep as much, although it is Summer holidays so he isn't getting out of bed as early either, so that could explain that!
He is on an overnight pump feed, and 2 Bolus feeds a day. He also has his calorie drinks and now is able to go back to some thin fluids, as thicker fluids are causing problems now. But, this also means he is allowed Ice-Cream again - so that’s a positive!!
We have just got back from a 3 day stay in the NMCCC (Neuromuscular Complex Care Centre) in London, and I have to say, I feel much more relaxed now as I feel Dregan is getting the oversight from the people who know his condition best. It was refreshing to be seen by people who KNEW DM, and who were treating us like real people and not dismissing our worries. If you’re in the UK and you get the option to have your yearly checks here (or, if like me you request!) I would definitely recommend it. The knowledge and quality of care alone is worth the trek!
All in all, he is pretty stable now, after a worrying year. His heart is showing changes, but not so much more than last time, so it’s a case of keeping a close eye, but he doesn't need any invasive tests just yet. His swallowing has deteriorated in some ways, but seems to have improved in others. I think this is a lot down to him being more aware. Also, his Carbamazepine seems to have helped him in more ways than just his Myotonia.
He had a sleep study, which showed he is borderline for night time hyperventilation, so we have to go back to London in 6 months to see if there is any change. If not, then he may be stable at this level, if there is, he will need night time ventilation. We don't want this, because apparently if he has that he can't be fed via his tube at the same time, due to the dangers of the fluid going into his lungs. This doesn’t sound too bad on the face of things, but it would be another thing for us to try to deal with as a family, and for Dregan to have to manage – it would likely be that he would need his pump on during the day, and he wouldn’t like that.
He had a full neuropsychology exam, to test his cognitive function (awaiting results) and we need to go back for an MRI at some point. I think I already know what the results will say, but it will be helpful to have a proper report, and a set of baseline results for any future tests. We have been told he is showing cognitive decline over the last 10 years, so this will help keep an eye on that. Also, it will give us a bit more knowledge about how we can support him now he’s growing up (I hope). Although, tbh, we do so much in that way anyway, I really don’t know what else there is!
I will update again soon, because we have some exciting news regarding a clinical trial he is going to be taking part in, in the next few months! Also, Dregan is going to be going on his MAKE A WISH Trip in the next few weeks, so I will make sure I write lots about this!
x
