I thought I was going to end up writing this live from Ward 130 today; but luckily that is not the case. Just my living room as normal. Which, looking around it, could do with a hoover.
T has had a rough few weeks on the whole. His symptoms have taken a bit of a sharp decline; the worst of which being some rather painful, and very frequent muscular spasms. Last night, his whole right arm and shoulder went into full spasm every 30-60 seconds for about 3 1/2 hours. Not fun at all. That is the worst they have been and it got me thinking about just how uncomfortable life has been of late for young (and totally incredible) T.
Over the summer we have had many appointments and conversations with a number of wonderful professionals who are involved in his care. His Neurology Nurse contacted me yesterday to ask if we could bring him in for assessment with his Neurologist as she also had some concerns regarding his decline. Also slightly worrying for us, has been a recent loss of appetite and spells of lethargy. T has a secondary medical condition called Cardiomyopathy…
Cardiomyopathy refers to diseases of the heart muscle. These diseases have many causes, signs and symptoms as well as treatments. In most cases, cardiomyopathy causes the heart muscle to become enlarged, thick or rigid. In rare instances, diseased heart muscle tissue is replaced with scar tissue.
Reduction of appetite and increased spells of tiredness can be signs that this condition is worsening; and that can result in very serious consequences.
So. Off we jollied to Hull Royal today. T, as usual, was a complete superstar. Although, he does seem to have developed some rather intense phobias of late. Spiders being the main one. Then again, who actually likes a spider? I mean, what do they actually need 8 legs for? And why does their main aim seem to be jumping out on you?? He is also, apparently, now scared of heights too and had to be coaxed into the lift to go up to the 13th floor… where he then sat on a window ledge and happily admired the view. Kids eh?
His specialist gave him a thorough check over: ECG, blood test etc, and has issued an additional medication to help with the spasms. We will be discussing his cardiomyopathy in more detail with his Cardiologist in a couple of weeks, so no massively pressing danger there it seems. THANK GOD.
We have been advised however, to up his calorie intake. A referral was going to be put in to a dietician, however T’s lovely Godmother (and my awesome Cousin) is a qualified and experienced dietician and so I asked if we could work with her instead. Now it has to be said that at this point, said Dr was somewhat hesitant about this. I think he thought she was self taught from the internet. After reassuring him that she has an actual job in a hospital and is not qualified through ‘dietetics4dummies.com’, he agreed.
My main fears regarding increasing T’s calorie intake are that I don’t want him to be eating a load of unhealthy, processed rubbish 24/7. Now don’t get me wrong, I don’t proclaim to be a mother who only cooks organically clean meals for her family… I love a KFC and T has quite a collection of Happy Meal toys. But, I do like to think, and the same can be said for all of my family, that we cook healthy and balanced meals. T has treats, but sweets are limited; as are fizzy drinks. Luckily, Dr Em* is on the case.
Over a very pleasant FaceTime conversation we discussed T’s normal daily diet. She explained that spasms cause additional calories to be burned and that some patients can need up to 3000 calories a day to compensate for this. This would explain T’s lethargy. Our dude, has spasm exhaustion. Lovely Dr Em has advised ‘Daily Fortification’ as a starting point. Just to clarify, thats fortification and not fornication. Basically, we have to maximise T’s calorie intake at every opportunity. Milk will now be whole milk and we should aim for him to drink 3 glasses per day. This can be further fortified with powdered evaporated milk, which Dr Em assures me most people have in their cupboards… perhaps in 1945 Em 😉
Creamy cheese sauces, with additional cheese on top. Butter on everything. And real butter, not margarine. Basically we take everything that T likes, and stick fat and protein on it. Rice cakes – add nutella… and butter. Bagels – add cream cheese… and butter. Curry – add cream or yoghurt… and butter. Beans on toast – add cheese… and butter. Encourage snacking. And add butter.
I feel like its going to be an enjoyable time for T and a temping time for me and J!
There is no-one I trust more to advise us on this than Em. The fact that she is a massive part of our family only strengthens that trust more. I feel very privileged to be in this position as I know that she not only knows T well and what will work best for him, but will also tell me when I’m being a total Faff. Winner winner, (buttery) chicken dinner.
Fingers crossed T starts feeling a bit better soon.
Now I’m off to dig out the Lurpak.
*it should be noted that Em is not an actual Dr, however she is a fully qualified and highly experienced Dietician. And she should have a Dr title, in my opinion. Even if she did once think that my belly button was a post-op wound…
4 thoughts on “Just put butter on it. Put butter on EVERYTHING.”
1. I like spiders!
2. I think home made blackberry jam with rice cakes etc. would be a good addition along with the butter!!! Mmmm…scone with butter, jam and cream!!! I agree about temptation!!!
You’re amazing Lucy Riley xx
I think you are all amazing! I was saddened to read your original blog, I had no idea of what it was you are all going through, I checked doctor google though. I am enjoying reading your blogs and I think you are fabulous and taking everything in your stride, especially when a lot of other people would crumble! Xxx
Hi my son who is now coming up to 23 has had FA since the age if two, so as you can imagine we have had many ups and downs. Please feel free to contact me if you would like to know anything or just say hi. By the way if I were you I would start your son on Coenzyme Q10 for his tiredness as that is all part of the disease, your Neurologist should be able to give you dosage, it’s perfectly safe my son has been on it since he was 5. Hope this helps. Louise
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