Friday 16th December, 2016
It seems quite fitting that my last post of the year (I’m not writing one next week – we will be enjoying our Christmas holiday as a family!) should concern the momentous occasion when Marc was actually permitted to leave ITU. It was August 7th and had been a long time coming. 43 days to be precise.
The nurses in ITU had begun to prepare us for the move. Mostly, this involved warning us how little support Marc would have once he was on a general ward. What we also hadn't realised was that the visiting hours on these wards were much reduced, which meant that we wouldn't be able to see Marc for as long each day. On the positive side, I knew that visiting a general ward would be far less stressful than ITU, and hoped that the children would cope with it better and therefore be able to see their dad more regularly.
As with everything else, the transition between ITU and the ward was not as simple as it might seem. There were a number of facts to consider. Firstly, the doctors wanted Marc to be as capable as possible of doing things for himself before he was transferred. This meant that, as well as ensuring he was able to feed himself and breathe without the aid of the ventilator, they wanted him to be as mobile as possible. The physiotherapists worked incredibly hard with Marc on the run up to him leaving ITU to try and make sure he would cope with life on a general ward where he would have a single nurse and a couple of auxiliary assistants per two bays of six beds rather than a nurse assigned to two patients, as was the case in ITU.
Another factor the doctors considered was the removal of Marc's catheter, which had been put in on his entrance to hospital in June. They did attempt to take it out several times before he left ITU, but I'm sure it will not come as a surprise that his bladder, like everything else in his body, had not recovered sufficiently to function by itself yet. In fact a lot of time passed before Marc was able to finally manage without a catheter. So Marc was transferred to the new ward with his catheter still in place.
A sudden realisation
The other consideration was Marc's stoma bag, and the nurses began to prepare Marc for the time when he himself would have to manage it instead of them. I clearly remember going to visit Marc one day towards the end of his time in ITU and finding him quite upset. Although he had been told several times that he now had a stoma bag in place, I don't think the reality of this had sunk in with him, probably because he had so many other issues to deal with. But on this particular visit he had made the sudden realisation that he had the stoma, he would have to learnt to cope with it, and there was a distinct possibility that he would have it for life.
Now I had read a little about stomas as I had been aware of it for a long time, and I knew that some were reversible and others not. Up until this point however, I had not asked anyone about whether Marc's was permanent. I can't explain why. Perhaps because there were so many other issues to deal with. Perhaps because I saw the nurses far more regularly than the doctors theses days, and I wasn't sure if the nurses knew the answer to my question. I suspect it was because I wasn't ready to deal with the answer until then. But on that day, when Marc was visibly upset about it, I went to seek out someone who could answer my question.
This is not to say that I didn't think we could cope if Marc had a permanent stoma. We could have done. Marc coped admirably with it once he learned how to and managed it very well for almost a year after his initial illness. Many people have them without others even realising, and a stoma is something which can be managed and coped with. But the initial shock of Marc realising he had one without any kind of warning was difficult, and to begin with we both needed time to adjust to the idea. Marc had not fully realised that he had one, he'd been so 'out of it' for so long, and I think I had conveniently ignored it and not dealt with it, because there were so many other issues to focus on.
That day I sought out a doctor, one of the ITU medics. When I asked him whether the stoma was reversible, he didn't actually know. He hadn't been involved in the initial operation and, while Marc had been under his care for months, he had been dealing with the more pressing issues like keeping Marc's blood pressure and temperature stable. He said he would find out for me and, give him his due, within the visit he came back to speak to me. He told me that when Marc had undergone the initial operation, part of his bowel had been removed and the stoma had been put in, but it was just as reversible. That the initial doctor who had done the emergency operation to save Marc's life could just as easily go back in and reattached the two ends of the bowel together. I can't tell you how much I marvel at what today's doctors are capable of.
I also remember the ward sister who was on that day, Lesley (strangely she was the one who had been on duty the night Marc was brought in too), taking me to one side and telling me that I should make perfectly sure that Marc was fully well before he had any kind of further operation. She said in her experience that people who went for bowel reconstruction surgery early, because they did not deal well with the reality of having a stoma, were twice as likely to have issues during the operation. Marc had been very very ill. He was still ill, still recovering, and in her opinion would not be ready for another operation for a long time to come. "Don't let him rush into it," she said, "No offence, but I do not want to see him back here in ITU." I took her at her word and made Marc promise when I spoke to him about the reversal that he would not agree to anything until we felt that he was sufficiently strong enough.
So, with most of Marc's major issues being resolved, the nurses simply told me one day that they were waiting for a bed to transfer him to. I was completely floored when I visited and they told me he would move that day. I knew it meant a huge upheaval and was nervous about what was to come. I couldn't imagine that Marc was ready, or could cope with, life on a ward where he had so little support and would get such short visits from us, having had us sitting by his bedside for hours at a time each day. But moving him they were.
As with everything else, it didn't happen smoothly. We were told on a particular day that a bed was becoming available, and Marc and I spent an extremely nervous visit that evening waiting for him to be transferred somewhere else. His bags were packed (not that he had that much in the way of possessions in ITU, he didn't really need much.) We sat together for a long time, waiting to be told when he could go. I expected that I would walk down with him and settle him into his new ward. I expected fond goodbyes to be said to all the ITU staff who had cared for Marc for so long. In reality I stayed until way past visiting hours had finished, eventually leaving at around 9pm, imagining that he would instead be transferred tomorrow. Then I got a phone call at 10.30pm to tell me that Marc was now in a new bed on a new ward elsewhere in the hospital.
As ever with everything that had happened to Marc, there was no planning for it. In the end, it simply happened because the bed became free and ITU probably needed the room. In one way I felt let down: it should have been a momentous occasion, Marc finally getting out of Intensive Care after more than forty days. In the scheme of things though, it was a huge step forward and one which propelled Marc into a whole new territory of recovery, which although just as challenging in its own way, was the next terrifying step we needed to take to ensure that we finally got the old Marc back.
Out of the woods
I hope you all have a wonderful Christmas. Enjoy the food, the gifts, the parties, but most of all, make the most of the time you have together with the people you love, be they friends, family or both. Thank you for reading my blog this year. I hope you have found it interesting and maybe a little uplifting at times. The Littlemore Family have a fantastic Christmas planned, starting today when we are all off school and work and have lots of time to enjoy everything the festive season has to bring. At last I feel like we can properly enjoy Christmas because Marc is pretty much 'out of the woods', and you know what?
I can't wait.