I've been putting this off for long enough because I haven't really got my head around it as a subject on the whole but I think we know each other well enough now that you'll cut me a little slack if I start wittering on.
I'm going back to the immediate period post transplant you see and things back then were a bit of a muddle in my mind. I was still hallucinating at times but there weren't quite as many horrific nights alone with my thoughts and staring at the ceiling counting the minutes through the medium of a pulsing ventilator. Retaining sanity through that period is actually one of the greatest accomplishments of all my time in hospital.
I mentioned in the last post about this period about the tracheostomy going in to help me but I never went into the specifics. The hole in your throat is a little under the voice box and there is a cuff that is inflated in the windpipe that effectively creates a seal there, meaning the oxygen from the ventilator all goes to the lungs and none escapes up the way and out. This cuff being below the voicebox means that no air goes over your vocal chords and so you cannot speak. Such a seal also meant that I couldn't take anything to eat or drink as it couldn't (theoretically at least) get past the cuff. This meant the insertion of a naso-gastric (NG) tube to feed me. Being fed this liquid fat directly into your stomach does give you the adequate nutritional cover but I would learn to seriously miss eating and drinking. Initially I was fine with all this though as I was sure it would only be a very short term measure until we could wean me off the ventilator. By this stage though I knew that our worries about me being a difficult patient were starting to come to pass.
Most patients only spend a very short time in Intensive Care before being moved up to the transplant ward and they progress from there. Complication after complication for me meant that I was stuck in ICU for as long as I was on the ventilator. The chronology of this is a bit on the difficult side to pin down in my head and the same applies for the family as it was a whole lot of stuff happening in a short time so recalling it now, even with Janine's updates as prompts, is difficult. I think I've got this little bit sorted in my head though. The first mishap that required a proper intervention was that one of my lungs was herniating slightly and pushing through gaps in the ribs. Prior to transplant you have to match all sorts of things and there is a slight tendency to overlook just how important the size and shape of the donor lungs and chest cavity of the recipient are in relation to each other. Now I have an unusually large chest cavity for such a short arse but even then inflammation of the donor lungs was causing them to literally push through my ribs so this required a trip back to the operating theatre. All things considered it isn't the biggest deal but it definitely needed addressing and unfortunately fixing that led to an issue that would dominate the next few weeks. Despite fixing that issue I came back from theatre and rapidly started showing signs of what they call surgical emphysema. I had the trademark crackling sensation on my chest when even the slightest compressions were made. My chest actually inflated by quite a considerable distance in that period. It was really weird to look down and see it so puffed out. This meant more medication that I can't really remember allied to more chest drains to try and clear it up. This, as I said, was not a rapid process.
While it was clearing though we could very slowly, and without any massive steps, start to reduce the settings on the ventilator. We actually at that point, with obvious hope in our hearts, changed the type of ventilator to one that was a bit more portable and would allow me to start doing more than just moving from bed to chair and back. We were thinking about a few paces at some point in the future.
By this stage I had spent about 7 years with only the ability to walk short distances thanks to muscle atrophy (hence the extensive, and progressive use of the wheelchair in that period) so the idea that I was going to start on the road to recovery on that front was simply thrilling. I knew it wasn't going to be easy but the journey of a thousand miles begins with a solitary step and all that.
I've mentioned me getting from the bed to the chair as being my main physio on any given day but I haven't gone into what an undertaking that actually was. The logistics of it were incredible just in terms of the number of lines and bits of tubing that I was dependent on. making sure that these could reach their designated connections at all points during the transfer was a proper two person job. Thankfully in ICU you have the one on one nursing and the physio to try and do it all but if it weren't so important to make sure it all stays in the correct place it would actually be quite comical to watch. And all that for the sake of an hour because I had a plug up my hole and would need back into bed where we would do it all again, only backwards. The only bit I used to get a bit worried by was the very short time they would disconnect the ventilator so they could switch sides to make the tubing reach. That was nerve wracking for a little while. I only had to use the ceiling hoist to move me once before moving onto a contraption, which I think was called an R-Jo (or something like that) to help me stand up and move. From there I quickly moved onto just using a zimmer frame for getting up and moving across. I knew walking was still a bit off from just how wobbly I was at this stage. Simply standing in one position even with the help of the zimmer was utterly exhausting.
When speaking to someone who had been in bed for three weeks after a compound fracture he told me he had to pretty much learn to walk again as his muscles had totally gone in even that short a period. I think it's safe to say my baseline was even lower than his so it was always going to be a long process for me. I had to prepare mentally for that, and this is where the physio team were especially good. They place demands on you for sure, but they are always realistic ones. I don't know if I just got lucky but the relationships I had with the physio team I had at that stage were just magic, especially Suzanne, who quite outrageously ripped the pish out of me on any given number of fronts. This I loved. In fact the same was true of most of the nursing staff too. You'd be forgiven for assuming that ICU is an incredibly serious and morose. With the amount of patients that don't make it allied to the number that are sedated or delirious then it's a fair assumption but the reality is far from that. Of course when the situation merits it then the staff at all levels are all business but there can be a lot of stuff happening on any given day that genuinely does lighten the mood of the place a bit for those that are aware enough to notice, and this is massively important. The camaraderie between the team that exists is so important to it functioning not just as a facility to get you ready enough for transfer to a ward but for you to stay sane in the meantime, I think at least. It occurred to me early on that these teams don't get nearly enough credit for the job they do as, like A&E specialists too for that matter, they are often viewed simply as the ones who keep patients alive long enough for the actual medics to come in and fix the real problem. Of course that's tangibly bollocks but because the patients they get in are often in such a bad way that death becomes such a reality of life in there that I just feel that they're not given the respect they deserve just because they have such a specialist range of skills that maybe wouldn't transfer to a ward job. I appear to be ranting.
I was really struggling to communicate by this point. The trachae being in obviously ruled out talking (although I'm told that there was the slightest whisper you could just about hear over the beeps and pumps of all the machines around me if it was important) but I had my phone where I could type things out if necessary and a card with the alphabet on it to tap things out, although that was incredibly infuriating. For reasons that nobody has ever actually clarified I had tremors that were uncontrollable. This meant the typing out of messages was difficult and trying to point to the correct letter on my card was difficult too. Even the slightest message was an exercise in patience for me and the person trying to decode it. Some days the tremors were so bad it was.
This did result in the most brutal haircut I ever had as I could only really specify a number two with the clippers but couldn't explain that was just for the back and sides so she just battered in and took the lot off. I thought it was funny right enough.
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