Before Saimi was allowed to spend the night at home, a nurse from Helsinki’s home hospital came round to check that our flat was suitable for home care. We had understood that once Saimi was discharged, the home hospital – whose aim is to bring hospital-level care into patients’ homes – would be there to help us whenever we needed it. During the visit, the nurse gave our home a very brief glance and, at the end, asked whether it would suit us if they came to check how we were managing after Saimi had been at home for two weeks. We were astonished to realise they wouldn’t actually be there to support us at all. I said that if we had not managed, there probably wouldn’t be much point in them coming round to check. And if we had, I wasn’t sure there’d be any need to confirm that either.
After the home hospital’s visit, we were left with the feeling that they simply wanted us out of the hospital quickly, after which we’d be on our own. Of course we had been eagerly waiting to get home with Saimi for good, but once we realised that help might not be available afterwards, we even started to question whether discharging made sense at all. We knew how to do the care tasks, but we wondered how long we would cope if we got no support whatsoever. We were both already exhausted, and Saimi’s care needs were demanding and round-the-clock.
Nights were unpredictable, and even when Saimi slept reasonably well, that didn’t mean we could. We regularly had to deal with things like a leaking stoma and sort out faults or alarms with the pumps in the middle of the night. And if Saimi woke up, getting her back to sleep could take a long time. Whether we’d slept or not, the next day we still had to manage the day’s many demanding care tasks, as well as all the everyday errands that came with looking after her at home. In practice, the care work alone was a two-person job. On top of that, of course, came the more ordinary things, like spending time together, playing, and other activities.
From the New Children’s Hospital’s point of view, after Saimi was discharged, responsibility for helping us was passed to the home hospital, which in turn didn’t take our concerns seriously, or at least didn’t see any need to actually support us at home. As I understood it, things could have been arranged differently, so that we would never have picked up the more demanding care tasks at all, and a nurse would have come to do them every day instead.
We quickly learned never to give an inch with the home hospital, because flexibility only went one way, and every bit we gave would be taken advantage of. In the end, our solution was to tell the New Children’s Hospital that we wouldn’t agree to be discharged unless there was the possibility of receiving at least occasional night care in the future. Eventually it was agreed that after discharge, Saimi would have one so-called interval night in hospital per week. That was also practical because her lab tests, which had to be taken more or less weekly, could be dealt with at the same time.
By this point it was clear that there was no sudden improvement to be expected in Saimi’s development or conditions. In general, things were already fairly good given the circumstances. Even so, her situation was challenging in many ways, and her development was very slow. In December we held a care meeting with the various specialists involved in Saimi’s care. We talked things through and agreed that, above all, the goal had to be prioritising Saimi’s quality of life.
Elli and I did our best to focus on the positive things, or at least on the matters we could actually influence in some way. I think the large number of problems, let alone the challenges that might still lie ahead, simply forced us to deal with them only when their time actually came. For instance, Saimi’s kidney and brain damage were things we couldn’t do anything about in practice. We just had to live with them and see where they led in the future.
One time Elli called me in tears after talking to the nephrologist about the kidney situation. He had said that at some point Saimi’s kidneys would probably fail, but that we might want to consider whether a transplant was even worth thinking about. Basically, he left us worrying about a problem that might or might not ever arise sometime in the future. Yet, worrying about it in advance surely did not help us. On top of that, the nephrologist essentially suggested that Saimi’s life might not be valuable enough to be worth trying to save. Perhaps he meant that we should weigh up whether a transplant would mean suffering at the expense of quality of life, but just worded it badly. Either way, those thoughts stayed with us for a long time.
Once Saimi had lost her appetite, feeding her solid food became a challenge. Although most of her nutrition went in intravenously, it was important for her bowel that food also went in by mouth. Purée, though, was hardly to her liking any more. For instance, although Saimi did like to suck on an empty spoon, if there was food on it, that usually brought on gagging or vomiting. We could still get Saimi to feed from a bottle, so we began mixing purée into milk and adding things like fats to it.
As a solution to the feeding problem, the doctors suggested a gastrostomy, a so-called PEG button, which passes through the abdominal wall into the stomach, so that nutrition and medicines could be given through it. We didn’t warm to the idea, though, as we felt we were still managing to get enough nutrition into her by mouth, and giving medicines was no trouble. The feeding problem was also a recent one, and we thought it might still pass. Above all, the thought of another procedure, and of the possible new problems that might come with it, felt daunting, although at the time we probably didn’t know enough about gastrostomy and its benefits in Saimi’s situation.
After that first night at home, we spent about another month gradually settling into home care for good. We were usually home for several days at a stretch and then spent a few nights at the hospital. We were on home leave over Christmas and spent Christmas Eve at grandma’s in Vantaa. That was also when Saimi got to know grandpa Kari, my mother’s long-time partner and my stepfather. Kari had earlier been diagnosed with Alzheimer’s, but I thought he was in relatively good shape for someone in his eighties, though he did need a lot of help from my mother. It was heartwarming to see Saimi sitting on grandma’s lap and Kari happily kissing Saimi’s hand.
When we returned to the hospital, a Christmas elf had left a present for Saimi on the ward too. The nurses on Mountain had written a Christmas card, and inside the wrapping was a small toy. Saimi surely didn’t understand what the present meant, but it definitely cheered us up, and Saimi no doubt liked her new toy as well. On many Christmases we gave the nurses on Mountain a box of chocolates ourselves, though I don’t remember whether we did so that year.
As people often do on New Year’s Eve, we found ourselves thinking back over the past year. It felt almost unreal. The year 2020 had practically begun with the trip to Barcelona and Saimi’s unexpected birth, and since then we had had a long journey in many respects. Now, with the turn of the year, a new phase of life was beginning for us once again. Elli went back to work, I took parental leave, and in mid-January, on the eve of her first birthday, Saimi was finally discharged from the hospital.
We had, of course, been enthusiastically looking forward to Saimi’s discharge. However, at the same time it meant that in day-to-day life the care responsibility was entirely on our shoulders, except for one night a week, when Saimi stayed overnight at the hospital. That said, we would still be at the hospital often, as Saimi had various weekly and monthly appointments, such as with neurology, gastroenterology, nephrology and surgery.
Thankfully, many of the practical aspects of home care had been arranged smoothly. Saimi’s nutrition bags and the medicines from the hospital were delivered to our door in a cool bag twice a week. For the care supplies, we got referrals from the hospital and ordered them ourselves from the city’s medical supplies service. A peculiar thing was that the order was submitted by writing out a free-form list of the items and quantities you wanted, which was a bit time consuming for the one who wrote it, and no doubt especially for whoever received it. The system might be fine for small orders, but we used a great many different items, well over fifty separate products, I believe. It was important to make sure we always had enough of everything. Every now and then, though, they would run out, because of delivery problems for instance, and then we would fetch them straight from the hospital.
At the time of Saimi’s discharge, we didn’t yet have any special aids for her. An ordinary cot, a bouncer, a gym ball and a pram were enough to begin with. Our building was built in the 1950s, so our home wasn’t accessible, but Saimi was still so small that things like the thresholds or the stairs up to our flat weren’t a problem. When it came to the arrangement of the flat, on the other hand, we quickly realised it had to change so that we would have a chance to sleep better. We moved Saimi’s bed over to the living-room and slept in the bedroom ourselves, where we could still hear things like the pumps’ alarms or Saimi’s little sounds.
The new arrangement didn’t turn out to be very practical, and it made us feel as if we’d gone back to being teenagers, since we had to tiptoe into the open-plan kitchen off the living room, for instance, to fetch a drink or snacks and then retreat to our own room to talk quietly to each other. Finally we figured out that the solution was to move our own bed into the living room and give Saimi a room entirely of her own. Sometimes the most obvious solution seems to be the last one to come to mind.