I decided earlier this year that I would get some health related things sorted, one of these things was to get to London for some tests. I had asked others last year to ring the Royal Brompton Hospital and see what was happening about my overdue check up but nothing ever happened, this time I emailed the lead professor directly to sort it out, she replied within a few hours and within a couple of weeks I had an appointment booked!
The day came, PA was here ready, dogs put in kennels, transport booked, then the hospital rang, no free bed could we come in tomorrow as they should have a bed by then, I wasn’t overly impressed but PA said she didn’t mind so we agreed. The next day went more smoothly, transport arrived on time and we were in London just before three o’clock. After getting to the room and settling in a bit the nurse came back and told us what was planned for the rest of the day and that we’d be going home Thursday, this hadn’t been planned but she explained that hospital transport had to be booked before 3pm and we had missed the cut off, I checked with my PA that she could stay and extra night and she agreed, not that there was really much else we could do as my van was back in Cheltenham and the train would be an expensive and not very easy option.
The first day involved an x-ray, a few vials of normal blood being taken, general obs, arterial blood being taken and being connected up to Tosca for an overnight sleep study, we also managed a quick walk to get my Mum and PA a kebab, which they thoroughly enjoyed. I did manage to get some sleep that night between Mum snoring and the nurse call alarm, located in the corridor outside my room, going off every few minutes.
Day two involved an echo heart scan, more blood being taken, more obs, two ECGs, seeing the dietitian and seeing the lady from speech and language therapy, that took up most of the day and I was exhausted and ready for bed by 5 pm, that didn’t go quite as planned though due to health & safety saying only the nurses and HCAs on the ward were allowed to hoist me, and the fact the ward was short staffed, I was feeling pretty ill by the time I got into bed at half seven. I had two of my medications pulled as well which led to an interesting night of vivid dreams and nightmares.
The final day I got to see my consultant and he went through the results of my stay (I’m going to hold back on what I share about that a little and possibly elaborate more in the future), the consultant ended up by saying they’d like me back next month for a longer stay, they want me to see lots of other team members I didn’t see this time with the aim of improving things for me, two of the things they want to do are try me eating solids again and spending a bit more time off the ventilator, being the untrusting and realistic person I am, I can’t help but feel like the donkey being led by a carrot in this, but we’ll see, and if things go well I may be eating my favourite meal of lasagne again in the future :)
Overall it wasn’t too bad a stay, the bed being my main bug bear, having electric beds is all well and good but not having hand remotes so the patient can control said beds is ridiculous, I couldn’t sit myself up to a position that felt safest and most comfortable for eating and drinking, I couldn’t make minor adjustments to my position for comfort, this increased pressure marking too, and it also takes even more independence away making you feel less empowered and extremely reliant. There were a few other issues while there and things I could moan about but I don’t want to put the staff or hospital down, overall they are excellent and I really see no point just moaning about general things.