The boy with the big heart.

Today was our check up with T’s cardiologist. Every appointment we go to now starts with the same questions from young Mr T:

“Do I have to have any tests?”

“Which Dr are we seeing today?”

“Will it be the electric shock test again?”

The past year has been particularly tough for our dude. He’s had some rather horrid and rigorous tests, so its no surprise that every hospital visit now brings worry and anxiety with it. Each appointment, we spend the first ten minutes in the waiting room answering the same questions, and FYI, it will NEVER be the electric shock test again because I will point blank refuse to witness my child be electric shocked again – even if it does test neurological function. It could predict the winning lottery numbers and I’d still tell them where to stick it.

The problem we face when answering these questions is that the vast majority of the time, we don’t know what we’re walking into either, just the specialist we are seeing. So you walk the tightrope of truth and reassurance. We have vowed never to lie to T, and so he is aware of the names of his conditions, although he does not fully understand what they mean. Todays questions also branched out into the purpose of a cardiologist. He asked what it meant to have Cardiomyopathy (Hypertrophic Cardiomyopathy for those who enjoy a Google-fest) and we explained to him that some of the muscles in his heart were a bit bigger than they should be…

“So basically, I’ve got a big heart.”

Yes T. You absolutely do have a big heart. In every possible sense.

I bloody love this kid. Have I mentioned that?

When we went in to the appointment today, we were joined by a Consultant Cardiologist from Leeds. She spent a considerable amount of time checking over T’s ECG with his regular Cardiologist and then scanning and photographing T’s (big) heart.

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She explained that the left wall of T’s heart is considerably larger than in should be, however, currently it doesn’t look as if its causing any problems, meaning his heart function is fine. However, this will need to be monitored regularly (every 6 months) to check that the growth does not cause any obstruction to the arteries or general functionality. If this happens, further action will need to be taken. We also need to be on the look out for changes in T’s day to day health – increased tiredness, further loss of appetite etc. Also, if he needs to rest, we let him rest rather than push him to keep going (he DEFINITELY tries to use this one to get out of going to ASDA).

The doctor also explained that she would be referring us to a specialist in Leeds and T will need to visit a specialist Sonographer for some more detailed investigations. If Leeds RI do not feel they have the necessary expertise to take T’s case on, we will then be referred onto Great Ormond Street.

Now, at this point J and I were a little confused, as we thought that Cardiomyopathy was quite common. Turns out, its quite common if you have Friedreichs Ataxia (that bugger is just the gift that keeps on giving isn’t it?!) but its not that common overall. In Hull, there has previously only been 1 other paediatric case in the past 10 years. Since T’s diagnosis we cannot fault the support from the specialists who are looking after him. Both his Neurologist and now, his Cardiologist have branched out for more help and support when dealing with these complex conditions. Clearly we are not the only ones a bit over whelmed! We are also awaiting a different appointment for Great Ormond Street to attend a new ‘Ataxia Clinic’ with an Ataxia specialist. I think I may need to get T a PA to keep track of his diary!

So there we are. More appointments, but definitely a team of people who are determined to get the care and management right for our unique boy, with the big heart.

 

2 thoughts on “The boy with the big heart.

  1. Wishing T the best of luck. Your blog is like a flash back to few years back when my son was going through the same. He’s now 23 and like you we face these hurdles along the way. We are lucky like you, to have a super team behind us, giving the support we need. My son too old now for Gt Ormond St, but he does go to the Neurology Hospital London, which is just around the corner. They see so many more cases than our local hospital. Great blog x

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  2. What a trouper your son is! I took my daughter, Scarlett to see Dr Paola Giunti at The Specialist Ataxia Clinic, based at the National Hospital for Neurology and Neurosurgery (NHNN) (just by Great Ormond Street) last year and she checked her over and did some eye examinations specific to ARSACS Ataxia. The whole experience & team were fantastic .If you have to go London, then give yourself an extra half-hour as the hospital building is a maze and a half. The good news is that across the road from the hospital/Russell Square tube station is a great place to eat if your boy likes Nandos or Carluccios 🙂 http://www.brunswick.co.uk/food-and-dining/ Sending big hugs and please keep on blogging Tracy

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