One Saturday evening in October, Samiya came in for her night shift, and as she was getting the infusion ready and injected fluid into the central venous catheter (CVC), some of it spurted out through the side of the line. Samiya closed off the open route into the vein by clamping the line below the hole, and we rushed to the emergency department at the New Children’s Hospital. The on-call anaesthetist – whose expertise covers CVCs – who came to assess the situation and struck me as tired and distant. She examined the catheter, made some sort of patch-up to it, and sent us back home to wait for further steps to be announced later. Once we got home, we unwound the fold wrapped around the catheter and stared in astonishment at the line, which was oozing blood. The anaesthetist had basically ‘fixed’ it with tape! Samiya put the clamp back on, and we set off for the emergency department again, even faster than before.
At the emergency department we demanded that another anaesthetist be brought in, because the previous one clearly had no idea what she was doing. At the time I thought it might have been partly tiredness from the on-call shift, but then again it was such a basic mistake that no one should make it under any circumstances. I also heard afterwards that this doctor had blundered with other patients too. Some kind of internal report was filed about her conduct, but I don’t know whether it had any consequences.
Soon after we got back to the emergency department, another anaesthetist came to assess the situation, a man with a fully tattooed arm – which you rarely see on a doctor – and a somewhat fun two-part first name, Kariantti (which combines two common Finnish names: Kari and Antti). For some reason we could never quite remember which way round the names went, so when we talked about him he was sometimes Anttikari, occasionally Kariantti, and now and then, just to be safe, Anttikari Kariantti, so at least one of them was right. He handled the damaged catheter confidently, made sure it was safe, and explained the situation to us expertly but in plain language. This time Saimi was admitted to the ward, Mountain, and the next day she went to the operating theatre, where the CVC was replaced with a completely new one. It was probably the first time ever that an operation went exactly as planned without any setbacks, and Saimi was able to come home that same evening.
In the evenings we washed Saimi in the bathroom on a reclining shower chair. While washing her we had to be careful that no water got under the dressing over the CVC, but otherwise we could shower her without much worry. Saimi loved the feel of the water and listening to its splash as she was lying on the reclined chair, so the evening washes could stretch out for quite a long time. We had assumed one couldn’t go swimming at all with a CVC, but at one outpatient appointment I brought it up anyway and said that Saimi would surely love being in a swimming pool. To our surprise, we were told that it would in fact be possible, even recommended, if it brought joy into daily life. The important thing was simply to protect the catheter carefully, and we were given a suitable protective film to use for it.
Just the thought of being able to go swimming together warmed my heart, because it could become a new shared hobby for us. I think it was one of Saimi’s care workers who tipped us off that Jaatinen, an association for families with disabled children, ran swimming groups that children could take part in together with their whole family. I got in touch with them and described Saimi’s situation. Soon I had a reply saying we were warmly welcome to join one of their swimming groups called Ravut (the Crayfish) for the spring term, which would start at the end of January.
While we eagerly waited for the swims to come, we practised covering the CVC with the film a few times and tested how waterproof it was in the shower. Finding the right technique turned out to be surprisingly easy, and the protection kept the water out well. The downside, though, was taking the film off, since it inevitably nipped at her skin a little bit. Later the film did leak on a few rare occasions while we were in the water, but most of the time we managed to keep it watertight in place. However, even when the protection failed, it was no disaster. It just meant that we changed the catheter’s own dressings and cleaned everything carefully.
In the end we couldn’t wait for Ravut’s swimming sessions to begin, so we got a head start. Elli’s father celebrated his 70th birthday in January, and we went for a few days to the Eden spa in Nokia with the grandparents and Elli’s three siblings to mark the occasion. It was around the same time as Saimi’s third birthday, so we got to celebrate that too, although a little early. We stayed in the spa hotel, and from our room we could pad straight to the pool area in our bathrobes and flipflops. We carefully protected the CVC, dressed Saimi in her swimming costume and a bathrobe, and went for a splash – many, many times over.
A curious look, perhaps also a touch sceptical, lit up Saimi’s face when we first stepped into the spa and she heard all the different sounds of water. The curiosity quickly turned to delight once we got into the water. We spent a lot of time in the hot tub with the grandparents, uncles, an aunt and cousins. Saimi sat in my lap with a big smile as the bubbles tickled her skin, and I floated her on her back, cradled on my hands at the surface of the water. Now and then we went into the bigger pool, where Saimi floated on her tummy with the help of a swim ring. The spa trip was a wonderful experience for our whole family and confirmed what we had suspected: Saimi absolutely loved being in the water.
Feeding Saimi at daycare was difficult, which worried us. She was happy to drink, especially water, and a fair amount of milk too, but feeding her purées, or giving her milk fortified with purée, was hard. We had long tried to ease the feeding difficulties, for instance with the help of a speech therapist, but with little success, and often only Elli managed to get Saimi to eat more solid food. After she went to daycare, we began to consider more seriously having a gastrostomy, that is, a small PEG button on her tummy through which food could be given straight into the stomach. In early spring, the gastroenterologist, Riikka, estimated that Saimi was now getting only about two days’ worth of her weekly energy needs from intravenous nutrition, so getting enough nourishment by mouth mattered all the more for that reason too.
It was obvious that the Revestive medication had made it possible to reduce the intravenous nutrition, because with it the short stretch of bowel that Saimi had was able to absorb more fluids and nutrients. The medicine had now come under the national health insurance’s reimbursement, which meant we collected it from the pharmacy and covered the deductible. As one month’s dose of Revestive cost about 10,000 euros, we paid the whole year’s maximum deductible, which was roughly 600 euros, the first time we picked up the medicine
Because it was an expensive drug, the Social Insurance Institution of Finland, Kela, attempted to rein in its use. We were told that Kela required Revestive to be paused for a month, to see whether it was having any effect. In practice the officials wanted the medication stopped so that they could see how badly the patient would suffer from malnutrition and dehydration. A pause could have had serious consequences for Saimi, with her many conditions, and on that basis we applied for – and were granted – an exemption to carry on giving Revestive as before.
Perhaps partly because of the battle with Kela, I found myself thinking again about securing Saimi’s care into the future as well, and in the spring, at the very last minute, before the three-year deadline ran out, I ended up applying to the Patient Insurance Centre for compensation for the medical error Saimi had suffered in 2020, which in my view had caused extensive brain damage and, with it, a severe intellectual disability. Even though the medical error itself was indisputable, pinning down exactly what had followed from it was more open to interpretation, so it was impossible to know the outcome in advance, and we were left waiting for the Patient Insurance Centre’s decision on its own liability to pay compensation.
Our daily life rolled along nicely, and things ran fairly smoothly. Once daycare had started, we mainly needed care help at home during the daycare holidays, at weekends, and occasionally on weekday evenings if, for instance, Elli and I wanted to do something together. Additionally, if Saimi was ill, or if some other children at Troolari had had a stomach bug – which could have been dangerous for Saimi – we kept her at home and tried to get a care worker during the day so that we could do our own work.
When it came to getting care help at home, the situation had improved because we had a small group of regular care workers from Tunne Hoiva, with whom we dealt directly. We arranged the shifts among ourselves, and the care workers in turn logged them in the company’s system. Likewise, if for some reason they couldn’t make an agreed shift, they let us know themselves, after which we would try to arrange a familiar care worker to cover.
The trouble with night care, on the other hand, kept disrupting our daily life and caused stress, because we could never trust that what had been agreed with the home hospital would hold. In the autumn they suddenly just stopped scheduling night shifts, and tried to withdraw from the task unilaterally. At that point my own insomnia had got worse, so help was needed more than ever. I phoned their senior nurse manager and asked what on earth was going on. She seemed surprised and promised to look into it, after which the night care continued in the old, yet unreliable, way.
As I recall, Samiya went on maternity leave in the spring and Titta changed employers, so basically Saimi had no night nurse at all. However, Samiya did do some individual shifts even while on maternity leave. Titta, for her part, told the home hospital that she could do night shifts specifically for us when needed. As far as we were concerned, the day of the week didn’t matter much, as long as what was agreed actually held, so the shifts were arranged based on Titta’s calendar. Despite the agreements and promises, several times Titta was suddenly moved elsewhere anyway, on the grounds of staff shortages.
It is possible that someone had an acute need for a nurse on those occasions, but treating a patient and an employee like that, all the time, struck me as outrageous. Again, I suspect it came down to the more or less arbitrary decisions of the home hospital’s ward manager. In the autumn, we held a care meeting with the home hospital, and she kept insisting they didn’t have enough nurses, even though there were vacancies open the whole time. The more I watched how the ward manager and the home hospital operated, the less I wondered why they struggled to find skilled nurses, or to hold on to the ones they already had.
Throughout the spring we eagerly took part in Ravut’s swimming group, which met in the therapy pool of a school for children with disabilities, a short bus ride from home. The swims were every two or three weeks, and we missed only a few of them. In February and March, Saimi had to spend nearly three weeks in hospital, on ward Mountain, because of norovirus, since as a result of the illness she needed things like intravenous antibiotics, red cell transfusions and fluids. If nothing else, that was when we truly understood just how serious stomach bugs could be for Saimi. Then again, even an ordinary cold usually meant a few days in hospital.
At the end of April we were back in hospital for a second, longer stretch, when Saimi had an operation to repair a prolapsed stoma, which by then protruded maybe ten centimetres or so, and move it to the other side of her abdomen. At that point we finally decided to go ahead with the gastrostomy too, and a PEG button was fitted for Saimi. The operation, carried out by the surgeon Annika, went well, and two weeks later Saimi was already back at daycare, though swimming still had to be avoided for a while.
Apart from those interruptions, we took part in every one of the swimming sessions. The Ravut group had about eight children with various disabilities, who came to splash about with their parents or grandparents, and some with their siblings too. It was wonderful that families got to do such an activity together, since that is often hard to arrange for disabled children. One of the Jaatinen association’s principles, too, was not to get hung up on diagnoses: their activities, which were quite wide-ranging, were meant for all disabled children and their families who felt they needed supported activities.
The forty-five-minute swims began by forming a circle and singing ‘a name song’, led by the instructor, in which each of the group’s actual swimmers was greeted one by one. After the name song we belted out a few more songs, doing various movements along the way, such as floating the child on their back and kicking their legs, or spinning round in a circle. Joy, laughter and splashing water were in full flow right from the very first moments.
After the warm-up, everyone was free to move around the pool and do whatever they liked. Usually the instructor set up different play stations around the pool, which formed a kind of course. Along one side of the pool, for instance, there was a tunnel made of pool noodles that was fun to go through. At the far end there might be balls of different sizes and colours, which one could throw into a basket or simply marvel at as they moved through the water. All sorts of floats and water toys were scattered along the edges of the pool as well, and the instructor showed what you might do with them.
Swimming immediately became a beloved hobby for our whole family. For my part, I deeply loved that we could do something so fun with Saimi, and I felt pure happiness every time we got into the water and I saw Saimi’s eyes sparkling with joy and the huge smile curving across her cheeks. From the very first sessions, one particular water game proved especially fun: a trick I’d named the ‘five-jump’. In it, Saimi would start off in the water up to her shoulders, and I held her under the arms. I’d start counting, bouncing Saimi a little bit up and down on each number: one, two, three, four, until we reached Saimi’s favourite number: fi-fi-fi-fiiiveeee!, at which I’d lift Saimi quickly out of the water as high as I could and bring her back down at a fairly fast pace, so that water splashed everywhere. The five-jump was always a big hit, and it was one of the must-do games whenever we got into the water.