In July, life continued to smile on us, and things were going our way. Saimi was sleeping even better than before, crying less, and she looked visibly healthier. The earlier paleness had given way to a healthy rosy colour, and her weight was approaching four kilograms, with little rolls now forming on her thighs. According to the doctors, we could even be cautiously optimistic about Saimi’s kidney situation.
The infusion break had been extended to twelve hours, and Saimi was free of tubes from nine in the morning until nine in the evening. This made it even easier to get away on home visits, and we went home as often as we could. Of course, we still had to spend time at the hospital too, for instance when Saimi had tests, received intravenous medications, or we had meetings with the doctors.
The covid situation had calmed down with the arrival of summer, and the hospital had eased its restrictions, which made being there a little more pleasant. There was a church worker on the ward who went around entertaining and playing with the children. She would come and play various instruments for Saimi, and sometimes we asked her to be with Saimi while we went to eat. We also found a new family activity when the physiotherapist Taru told us about the hospital gym, which parents were welcome to use in the mornings. On a few occasions when we were all at the hospital in the morning, we went to work out together.
As various covid restrictions were eased in Helsinki during the summer, we had the chance to take small breaks from our daily routines. With the situation allowing it both inside and outside the hospital, Elli and I had a few date nights and went out for dinner. At one of our favourite restaurants at the time, Old Boy, having excellent Korean food, soju and good conversation, made life feel normal for a while. After dinner we headed home, and before going to bed we called the hospital to check on Saimi. We always did that if we were both spending the night at home, even if we had only just left the hospital and Saimi had already been asleep when we left.
When we were on the ward, we often had lunch at the staff canteen, and it was interesting to observe how the covid restrictions there evolved. The canteen served several nearby hospitals and also functioned as the campus cafeteria for the university in the area. Throughout the covid spring, the place was packed at lunchtime with staff from different hospitals eating side by side, after which they all dispersed back to their own hospitals and wards. We were used to the Spanish rhythm of eating, and thus usually had lunch later, when the canteen was fairly quiet. A few times, however, we went to the canteen entrance at rush hour and concluded that it was probably not the best place to spend time in a pandemic. In June, when restrictions were being lifted elsewhere, the canteen took every other seat out of use and no longer allowed people to sit facing each other.
Saimi’s good health and the twelve-hour infusion break opened up entirely new possibilities. Excited by the freedom, we decided to try holidaying even further afield, that is, at my mother’s place in the neighbouring city of Vantaa. My mother was herself away at a summer cottage in Sipoo with my sister’s family, and our job was to take care of the flowers in her backyard. We rented a car for the week to make getting around easier. In the mornings we would leave the hospital for grandma’s, where we spent lazy summer days lounging around, grilling in the backyard and tending to the flowers. In the evenings we drove back to the hospital and continued the holiday the next day. Saimi also got to meet more of her relatives during this time. Elli’s sister Anna came to see us at my mother’s place, and we in turn made a day trip to Sipoo, where grandmother was staying at the cottage with my sister Annika, her husband, and their children, Saimi’s cousins.
Towards the end of August, our training for Saimi’s discharge began. Throughout her time in hospital, we had of course taken part in her care as much as possible. Whenever we were present, we gave Saimi her oral medications, which the nurses brought to us. We also handled many of the ostomy-related tasks independently, such as changing the ostomy bag, attaching the baseplate and caring for the skin. We had also practised giving injections under the skin.
The central venous catheter (CVC) required particular care, because it was a direct route into the bloodstream. Under the guidance of the nurses, we had learned how to clean the catheter entry point, that is, the spot where the tube went under the skin on her chest. The entry point was normally well protected, and the dressing was typically changed every five days, when the skin was cleaned and new dressing was applied. It was important, however, to monitor the catheter at all times, and if there was any suspicion that something had got under the dressing that shouldn’t be there, the cleaning procedure was carried out straight away.
Until now we had not actually used the CVC ourselves, and this was what we now began to study, as at home we would be using it every day to provide Saimi with fluids and nutrients. When the CVC was not in use, the visible part was wrapped in gauze or folded swabs and secured with a crepe bandage. It always had to be protected, meaning we had to make sure it didn’t get caught on anything and that there was no pulling on it. On the other hand, every time the CVC was used it carried an inherent risk, as the route into the bloodstream was then open. Hygiene was therefore of the utmost importance, and if I remember correctly, our training began with learning to wash and disinfect our hands thoroughly. After that we had to learn how to handle the CVC and keep it in working order.
At home, Saimi would receive hydration, a nutritional solution and lipids simultaneously through the CVC using three separate infusion pumps. The pumps themselves were fairly straightforward to use and came pre-programmed with the settings for each infusion. The fluids, however, had to be “primed”, meaning that the solution bag had to be connected to the tubing, the tubing to the pump, and then the pump was used to run the solution through the tubing, before finally connecting all three lines together. During priming, some air would always get into the tubes, and the air bubbles had to be tapped out, which was often a time-consuming task. While preparing the infusion, we also had to make sure the tubing stayed sterile. On top of all the preparation, we of course had to learn how to connect the tubing safely to the CVC. There were numerous practice sessions throughout the autumn, and they were continued until both of us could do it repeatedly without any mistakes.
Our exceptionally long run of good fortune took a turn towards the end of August. An EEG revealed what is known as hypsarrhythmia, a characteristic feature of a severe form of epilepsy in early childhood also called infantile spasms syndrome. It is a serious condition that can damage developing brain function and cause a regression in skills already learned. Strangely, while the hypsarrhythmia was detected on the EEG, Saimi showed no outward signs of it, such as seizures. In any case, hypsarrhythmia always requires urgent treatment, and Saimi was started on medication for it.
Later that month, Saimi developed a fever and had to stay in an isolation room as a precaution. Until the covid test results came back, the nurses entered the room in full protective equipment, including face masks, protective gowns and gloves. Neither Elli nor I had any symptoms, and we were fortunately allowed to stay with Saimi, but within the hospital, we were only permitted to move between our room and the exit, wearing masks at all times. A fever in Saimi’s case was always a serious matter that required further investigation. Due to her multiple medical conditions, an ordinary cold was considerably harder on her than it would be on a healthy child, and she would often need additional hydration or even a blood transfusion. Furthermore, there was always a risk of infection associated with the CVC, and it was important to establish whether the fever was connected to it.
These new setbacks and being placed in isolation felt like a harsh reality check. The longer things go smoothly, the grander the castles in the air you manage to build, and the higher those towers fall when they collapse. However, we were fortunate to be able to enjoy such a long stretch when everything seemed to be moving in the right direction and we got to do many enjoyable things together as a family. And just as good moments pass, so do many hardships. Saimi’s covid test came back negative and the fever eased within a few days, so we were able to move around freely again and continue our home visits as before. After the fever, we also received good news when tests showed that the structure and function of Saimi’s heart were normal. We had no particular reason to expect otherwise, but rarely in my life have I been so happy to hear the word normal.
