Royal Brompton – Day 2

Royal Brompton – Day 2 of my seven day stayI slept reasonably well for the sleep study, the nurse alarm in the corridor woke me a couple of times and I was a bit restless but it’s better than most times I’ve stayed here.

The morning rounds meant I got to see Prof Simonds who I haven’t seen in a few years, she’s brilliant and really cares about her patients, she listens well too and gives advice without pushing.  We discussed meds,tests I would have and what other things I might want during my stay, the results from my sleep study were very good with no need to change any ventilator settings, she also classed me as young which was nice.

After this I went through a few stretches with a physio who said he’d get the Occupational Therapists to visit tomorrow, this was followed by testing a new ventilator and some masks.  The ventilator decided to mess up during this which ended in everyone scrambling to get the one off my wheelchair so I didn’t pass out, I went very pasty and my anxiety levels were somewhat high by the end of it!

I had just over an hour to recover before my appointment at videofluoroscopy, I pushed through and managed to get there.  This procedure involved recording me swallowing with an X-Ray machine, I don’t usually eat or drink sitting in my chair so it was a little tough, I managed liquid, yogurt and then mushed up banana.  The results were that they were very surprised how good my swallow is and the control I had over it, they agreed I swallow better without the ventilator on but said I should try sipping rather than gulping, it’s probably good they haven’t watched me downing my shakes.  From here it’s up to me but they think I should be able to eat things like chilli con carne and lasagne, I will work up to it slowly to be safe.

When we were back at the main hospital the cardiologist came, he didn’t seem overly concerned about my heart results although function has reduced, he has had me increase my heart medication as I was on a tiny dose and thinks it should increase it’s strength, I don’t need to change anything I’m currently doing or take things easy and he didn’t give me the news I’d been worried about, it seems I may still have years ahead of me.

a ventilator mask with blood on Royal Brompton - Day 2


The day ended with a little accident, Mum and I had made a contraption so I could see and use my laptop while laying on my back which decided to fail, and I have a cut on my nose, this put the nursing staff into a flap but after the initial spurt of blood my nose was okay if a little sore.   I’m also having another sleep study tonight and have had the obligatory obs and tummy injection, let’s hope tomorrow brings less drama and stress.

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