As arranging the interval nights had been a recurring struggle, Maarit, the hospitalist on Mountain, suggested that the home hospital could start organising them at our home instead. That suited us perfectly, of course, since caring for Saimi at home was more practical and more pleasant for all of us than going back and forth to the hospital. At the end of August, while Saimi was on Mountain, a nurse called Samiya came in for one night shift to learn the care routines. The plan was that she would then come to us one night a week to look after Saimi, and would teach the tasks to other nurses too, so that we would have a small group of nurses of our own for the night care.
Around the same time there was a change in Saimi’s care that would turn out to matter a great deal, although we did not know it back then. It was suggested that Saimi would start a new drug called Revestive, which was meant to help her bowel absorb fluids and nutrients. Laura, the gastroenterologist, told us the drug could be expected to cut her need for intravenous nutrition by 20 to 30 per cent. She also said that at some point it might even make it possible to take one night off a week from the intravenous nutrition. Laura was careful to say we could only be cautiously hopeful about that, since we had to remember that Saimi had only a short stretch of small bowel left.
We thought trying the drug was a good idea. Every dose of Revestive had to be prepared by mixing liquid from a syringe into a vial of powder, then drawing the mixture back up into the syringe and injecting it under the skin. It was given daily at home, so we were shown how to do it. Revestive wasn’t covered by the national health insurance at that point, which meant we couldn’t get it from a pharmacy at a subsidised price, so we collected a month’s supply from the hospital when we went in for outpatient appointments. We got it for free, but we heard it was staggeringly expensive because of the patent. A year’s worth apparently came to more than 100,000 euros, although when the drug worked it also brought down the costs of other care considerably.
Revestive really did prove effective. Within a month and a half the nightly intravenous fluids were stopped, so from then on Saimi was given lipids and nutrient solution overnight, with fluids added when needed. Laura reckoned the drug seemed to be working so well that a night off might be possible within a few months.
Revestive’s effect, among other things, was monitored by taking samples almost every week. One good thing about having the interval nights at home was that the nurse could take the blood samples Saimi needed at the end of her shift, before the morning medicines. Some of them had to be kept cold and didn’t last for long, so we agreed to take them ourselves to the lab at a nearby health centre, since the home hospital refused to come and collect them.
Things didn’t go entirely smoothly with the home hospital, though. As a rule they couldn’t arrange a night nurse for us every week. Sometimes a missed shift was made up for by having two night shifts in one week, but often a shift simply wasn’t arranged at all, because there were no nurses available. The home hospital also cancelled shifts we had already agreed on, and Samiya was moved elsewhere on the grounds of staff shortages. I remember a few occasions when the home hospital cancelled the night care and we still managed to get it arranged at the hospital on Mountain, but those were exceptions.
There was also a constant problem with delivering the samples the home hospital took, because the health centre didn’t want to accept blood samples from us. It is understandable, of course, that people don’t usually bring in blood taken from themselves, and our arrangement must have been an unusual one, so we had to explain the same thing over and over again. Sometimes I would just walk into their lab and give the impression that I was bringing samples from the home hospital, which in a way I was, and then it was usually dealt with without much delay.
One day, while we were doing Saimi’s care routines, we noticed that the surface of the central venous catheter was damaged in one spot. Our first fear was that there was a hole in the line, which would have been very dangerous. A closer look showed that the outer layer had lifted into a flap, but the surface underneath was still intact. We had protected the catheter as best we could, and we couldn’t work out how the surface could have been damaged. Luckily the catheter didn’t have to be replaced, and the damaged part could be reinforced instead. That did have to be done in an operating theatre, since the procedure needed a sterile environment. So in the end we got away with a fright.
The other line, the Malecot, had been causing more and more trouble for a while. It leaked easily, and the skin around its base suffered badly for it. The Malecot also had to be changed for a new one every so often, because after it had been in place for a while it would, for some reason, start to make Saimi uncomfortable and cause her pain. Changing it was quick work for a surgeon, but an unpleasant procedure for Saimi. In late autumn the surgeons suggested going back to an ordinary ileostomy. They thought that now Saimi had grown and the skin on her abdomen was otherwise in good shape, it might work well.
Saimi was given an operation date in mid-November for the ileostomy. As we had had a number of bad experiences with various operations or their aftercare, we were very nervous about it. Before the operation we went to visit the grandparents in Iittala, as we thought recovery might well take a long time. The operation itself went well, however, and Saimi’s recovery was already coming along nicely, until an incisional hernia appeared on the third day and had to be repaired in another operation. In the end the hospital stay lasted just under two weeks.
The surgical wound took its time to heal, but the ileostomy clearly improved Saimi’s wellbeing, and we didn’t have the same problems as before with getting the baseplate to stay on. It did come off or leak every now and then, especially before we had worked out the best way of fitting it again. Saimi’s care workers generally had very little experience of stomas in children, which is why we usually changed the baseplate when needed. Otherwise looking after it was quite simple. For the care workers it mostly meant emptying or changing the bag and keeping an eye on the stoma in general. The important thing was to notice if any poo had leaked under the baseplate, because if it was left to sit there it could damage the skin, and after that we would certainly have trouble getting the baseplate to stay put.
Now that Saimi had a care worker a few days a week, I began to think about going back to work part-time. I suppose I was missing having something other than housework and care tasks to think about and do. We also needed more income around then, because our new home would be finished the following spring and we still had to manage to get a bank loan to buy it. We had signed the purchase agreement earlier, but the actual payment was only due once the house was ready to move into. I contacted Kirsi, our social counsellor, and asked whether I could work part-time while also being a full-time informal carer, and I was pleased to hear that I could. My earlier fixed-term contract had already ended, but the same employer had a research project running, and I was hired for it. From the end of November I worked about one day a week, doing it remotely from home whenever there was a good moment for it.
Towards the end of the year Saimi was doing more steadily and the unexpected hospital visits became less frequent, so we planned a trip of several nights to her grandparents in Iittala. Travelling was limited a little by the fact that Saimi’s refrigerated nutrition bags were delivered to our home on Mondays and Thursdays, since they only stayed usable for a few days. The hospital told us, though, that we could get so-called travel nutrition from them, which didn’t have to be kept cold and lasted longer. It was clearly of poorer quality, so it wasn’t meant for long-term use. Another thing that gave us room to travel was that Saimi responded so well to Revestive that in December already – just as Laura the gastroenterologist had suspected – we could start taking one night off a week from the intravenous nutrients. We had been sceptical about it, so having the night off happen so soon felt almost miraculous.
We decided to go to Elli’s parents for a whole week over Christmas. For a trip that long we had to take quite a load of things with us. The various care supplies filled one big Ikea bag, and the nutrition bags and the medicines that needed to be kept cold each had their own cool box. On top of that there was a plastic bag full of Saimi’s food, because after starting Revestive we were trying to increase the amount of energy and fluid she got by mouth. Her milk was made up from powder with fats mixed into it, and a few times a day some purée as well. Saimi still wasn’t keen on the purée drink, and getting her to take it was hard work. Alongside plain milk, though, she was very fond of still mineral water with a good bit of salt added. Saimi drank the water greedily from her bottle, and giving her water also calmed her down if something had upset her.
Christmas at the grandparents’, in their big house in the middle of the peaceful countryside, was relaxing, and we all enjoyed being there very much. There had been heavy snow, which added to the pleasant Christmassy feel. Elli’s mother cooked us wonderful Christmas food, and day after day the table was positively groaning with all sorts of traditional treats. Saimi was happy to be held by her grandparents and often sat smiling on grandpa’s knee, listening to his slightly gravelly singing. While Saimi spent her time contentedly with her grandparents, Elli and I got to relax with a long and thorough sauna of our own.
After that comfortable week of Christmas holiday, we carried on holidaying by going to my mother’s for a few days over the turn of the year. The year ended on a better note and in a better mood than we had dared to hope for not long before. A great deal had gone significantly in the right direction, both in how Saimi was doing and in our family’s life in general, and daily life was no longer just a constant churn of one setback after another. We even dared to be cautiously hopeful about the coming year.