Life on ward Mountain started to become more of a routine, and at the turn of June, we moved into an identical room at the other end of the corridor. As Saimi was doing relatively well and one of us was usually present, the ward staff assessed that she did not need to be right next to the nurse’s station, which was inevitably a bit noisy. We had more privacy in our new room but we naturally needed the nurses’ help constantly, as there were plenty of care procedures that we could not or were not allowed to do. Treatments, medicine and nutrients were now on a specific daily schedule, or at least, that was the goal.
While Saimi’s condition improved, our resilience, or perhaps mine in particular, was tested at times, which felt kind of contradictory. On the other hand, looking back, it was probably normal: Once the prolonged survival mode began to ease, it no longer maintained our ability to cope as before. We met a psychiatric nurse a few times, but we did not feel it was of much help, so the appointments just tapered off. Fortunately, Saimi slept fairly well at night, and the night shift often had the same good nurses, Mika and Riina, so we felt comfortable enough to spend the night at home together more often, which I believe supported our ability to cope.
Mika was Saimi’s first male nurse. When I stayed overnight at the hospital for the first time after moving to Mountain, Mika was on the night shift. Although gender, of course, does not matter when it comes to care, it felt different in a good way to do nursing tasks with a male nurse. In the middle of the night, the ostomy baseplate started to leak, and I called Mika to help. At that time, the abdominal surgical wound was gaping and the skin around it was in poor condition, making it extremely challenging to attach the baseplate and requiring improvisation. I calmed Saimi down, while Mika focused on working with the baseplate. He handled the job very carefully and unhurriedly, as if creating a piece of art, which I appreciated greatly. If I remember correctly, the baseplate stayed in place until the next day, which was a good achievement back then. That night also stuck in my mind because I could not get any sleep, even though I was extremely tired. Soon Elli and I concluded that it was better for me to sleep at home so that I would have more energy during the day. Elli, however, still frequently stayed overnight with Saimi as well.
Our exhaustion had also been worsened since the intensive care unit by the constant rotation of Saimi’s nurses, and at Mountain, this rotation increased even further during the daytime. It was mentally draining, as we had to constantly go over the same things with new people. Each nurse also had slightly different ways of working and communicating, which sometimes strained our relationship with them. The contrast with, for example, the practices at Sant Pau in Barcelona was stark. There, the same nurses worked the same shifts and had primary responsibility for the same children. Consequently, communication and building trust with the nurses were easier, and there was a clear continuity in care from day to day. I still remember most of Saimi’s nurses from Sant Pau well by name. In contrast, the number of nurses in Finland was so immense that I have trouble remembering even the names of those we spent the most time with.
In Finland, the rotation of nurses was justified to us by the ward’s desire to maintain broad competence in patient care. In Saimi’s case, however, this meant in practice that the nurses did not necessarily have time to properly learn established care practices – such as attaching the baseplate – before a new nurse was on shift again, wondering how to fix the leaking setup around the stoma. The problem was not competence, but precisely the excessively rapid rotation of the staff. Indeed, as we later noticed, Mountain had excellent and professional nursing staff who possessed expertise regarding many of Saimi’s illnesses and special needs.
While the “one parent” restriction was reasoned to us by the hospital’s aim to reduce the number of people and contacts inside the hospital, Saimi was continuously surrounded by new nurses, meaning that we were all forced to interact with numerous different people. This was one of the arguments I used to demand a reduction in nurse rotation, as I noticed that the problems of mental burden or discontinuity of care were not taken seriously. I do not know if my arguments made a difference, but the number of nurses in rotation, for one reason or another, decreased and the same nurses took responsibility for Saimi’s care more frequently. In my opinion, interaction with the nurses and continuity of care improved after that. Of course, this may also be partly because initially every single nurse was a complete stranger to us, but later we knew an increasingly large share of those coming on shift.
At the New Children’s Hospital, it was not only the nurses who were rotated, but the ward’s paediatrician, who was responsible for Saimi’s daily care, also changed weekly. At first, we wondered why Saimi had a new doctor every now and then asking and pondering about the same questions, until it turned out that this was standard practice, where a specialising paediatrician was always on the ward only for one week. We were astonished and annoyed, as the constant changing of the doctor seemed completely absurd. The practice is probably reasonable if the patient has somewhat straightforward problems, but Saimi had several serious illnesses and her medical situation was complex. It was nerve-racking to face a new paediatrician every Monday who started familiarising themselves with Saimi’s situation all over again and, for instance, could not answer our questions at the beginning of the week. We complained about this practice constantly to the ward hospitalist, Maarit, who was responsible for the operation of the entire ward and the coordination of care. At some point, Maarit concluded that it was better to take charge of Saimi’s matters herself instead of the rotating specialising paediatricians, for which we were extremely grateful.
As June went on, practically everything seemed to be taking a turn for the better. Saimi’s neurological status was assessed as good, and the progress with her bowel was also deemed satisfactory, although the overall condition of her kidneys remained concerning and was monitored closely. Saimi’s surgical wound healed nicely, and the stoma baseplate stayed attached for record-breaking times. Managing the stoma was also made easier by the fact that we now had access to a bathroom and could bathe Saimi anytime. Whenever the baseplate leaked and had to be changed, we were always able to wash her skin properly. In addition, bathing brought a little joy to our daily routine. During the first few baths Saimi admittedly had her doubts, but soon she clearly started to enjoy being in the water.
Saimi’s milk volumes increased rapidly, and she often even demanded to have more. However, even though she had a great appetite for milk and her bowel was able to absorb it surprisingly well, Saimi would likely remain permanently dependent on intravenous nutrition, which is why a central venous catheter was placed after her transfer to Mountain. In practice, it was a thin tube that went under the skin on the chest and straight into a vein. A part about fifteen centimeters long remained visible, through which fluids, nutrients, and intravenous medications could be given. The catheter reduced the need for cannulas, and unlike a cannula, fluid did not have to flow through it continuously, as it could also be capped off between uses. Getting rid of the tubes from time to time was literally liberating, as it made moving around with Saimi much easier.
Until then, the infusion was on around the clock, and after the insertion of the central venous catheter, the breaks were initially a few hours long. The break was gradually extended once it was ensured that Saimi’s body could tolerate the cycling and, for instance, her blood sugar did not drop too low. Encouraged by our new freedom, we headed even further on our adventures. We bought our own stroller and first went for walks in the parks near the New Children’s Hospital. Saimi seemed to enjoy the walks, and when awake, she usually listened peacefully to the sounds of the environment. Being outdoors felt amazing: how wonderful it was to be able to walk outside with the whole family and enjoy summer! Soon our trips grew even longer, and after just a few days, we journeyed two to three kilometers away to an island called Seurasaari.
It did not take long before the infusion break was extended to six hours, which meant we could go even further from the hospital. Six hours would be plenty of time to visit home! However, we no longer had a car at our disposal, so we pondered how we would cover the roughly five-kilometer distance that we usually traveled by bicycle. We had no intention of using public transportation, and I think it was prohibited by the hospital anyway. Riding bikes was also impossible with Saimi, and the distance was too long for a round-trip walk. We did not have to dwell on the matter for long, though, as to our surprise, the nurses told us that the ward would provide us with taxi vouchers for home visits. All we needed to do was get a child safety seat for Saimi, and we could take a taxi straight from the hospital entrance to our front door.
Our first home visit felt like a significant milestone in our lives. And of course, it really was one: after two countries, three cities, four hospitals, and five months, we were finally all at home for the first time. It was a fantastic feeling to lounge together on the bed or lie on the sofa with Saimi snoozing on my chest.
With the home visits, it was also nice to be able to enjoy the outdoors around our neighborhood and meet our friends and their families, for example, for picnics in the parks. The sun was shining and life felt good. Almost like normal family life.
Discharge from the hospital was already visible in the future. At least as a glimmer. Our need for a larger apartment was now more acute than before, as it was clear that we would need space at home for various medical aids, supplies, and care in general. Earlier in the spring, we had fortunately been lucky in the lottery for the City of Helsinki’s price-regulated (HITAS) apartments, and at the end of June, we signed the deed of sale for our new home, where Saimi would have her own room. However, we would not be able to move into our new home for another two years, until the building was completed, but we figured we could manage in our small two-room apartment until then.