In early September, the doctor gave us permission to give solid food for Saimi, that is, baby purées. However, it was important to keep track of how this affected her stomach and bowel function, particularly nutrient absorption. We started with very small amounts, giving her just a teaspoonful of purée per feed to begin with. She wasn’t particularly taken with it the first time, but it didn’t take long before she started to enjoy eating baby food. The purée didn’t interfere with nutrient absorption either, but quite the opposite, and soon Saimi was allowed to eat as much as she wanted.
An EEG scan revealed that the epilepsy medication Saimi had already started hadn’t brought about the improvement we’d hoped for in her hypsarrhythmia. We had, of course, been aware that this was a possibility, but the news still came as a shock. Pirjo, Saimi’s neurologist, went to talk to Elli about the results at the hospital. I was at a work event in Turku at the time and joined the conversation by phone. Pirjo reminded us that if hypsarrhythmia continued for long, let alone if it couldn’t be corrected at all, it could lead to extremely serious consequences, such as a halt in development or even regression.
Saimi would start so-called ACTH therapy the very next day, a treatment used for severe forms of epilepsy. The plan was for it to last six weeks, but it would be stopped earlier if it proved too much for Saimi to cope with. Pirjo warned us that Saimi would be in constant discomfort throughout, which would likely show up as crying and irritability. There was no real alternative, though, so the treatment had to go ahead.
Being aware of how unpleasant the treatment would be made it maybe a little easier to prepare for what was coming, but the next month and a half was hard on Saimi. The treatment required close monitoring, so we weren’t able to go on home visits either. Saimi was often unsettled, and we comforted her as best we could: holding her in our arms, singing to her, giving her milk from a bottle, and gently rubbing her earlobe, which I had noticed, back in intensive care, would calm her down. The nights in particular were often difficult, which left Saimi tired and dozing a lot during the day.
However, the time during the treatment wasn’t all suffering: there were times when Saimi was feeling quite well, and besides her milk, she really took to eating purée. In fact, she liked eating so much that she would get upset if the service wasn’t quick enough and she had to wait for the next spoonful.
Despite the many good moments, the ACTH therapy was hard on us as parents too. A few days after the treatment began, when we were setting off one morning to see Saimi and meet with the doctors, I noticed that my bike had been stolen overnight from our bike cellar. At that moment it felt like a grotesque twist of fate. I wouldn’t have believed that losing a possession could feel so bad, but that was probably partly down to being in a rush to get to Saimi that morning. Elli’s unlocked bike, however, hadn’t been touched, so she went on ahead so that at least one of us would make the appointment on time. In the end, I think I made it to the hospital on time too, but my annoyance over the theft lingered for a long time.
A couple of weeks after the ACTH therapy had started, Elli and I decided to have a short staycation and try to get some rest. The hospital arranged a dedicated nurse for Saimi, meaning she had a nurse with her in the room at all times. We booked a room at the Lapland Hotel in central Helsinki, which had, among other things, a sauna and a large, comfortable bathtub. We stayed with Saimi until early evening, then headed to the hotel. We had a sauna for quite some time, sat in the bath while enjoying a glass of wine, and later ordered food from a good restaurant, delivered to our room. We called the hospital several times that evening to check on Saimi, and every time we were assured that everything was still fine, as it surely was. In the morning, we had breakfast at the hotel and headed back to the hospital.
Elli also looked into peer support and got in touch with the Epilepsy Association, who gave her the contact details of a support person. I was thinking that I no longer knew what exactly I needed support with, since there were so many serious conditions to deal with. Then again, at that very moment, short bowel syndrome and even her kidney problems felt relatively minor compared with the damage hypsarrhythmia could do. Of course, with peer support the specific diagnosis doesn’t necessarily matter that much, and many families are dealing with difficult situations that don’t come down to one illness or symptom. At the time, though, I didn’t see peer support as something I needed, but rather thought of it as just one more thing that would consume our time and energy. In reality, some kind of talking support or peer support would certainly have done me good, since I was, at times, teetering close to the edge of what I could handle. It must have shown sometimes too, because on one occasion a nurse firmly told me to “take some time off” and rest.
Once ACTH therapy came to an end, Saimi’s wellbeing improved, and she started smiling more easily too. One morning, when Elli arrived, Saimi was giggling away to herself in her bed. To our great relief, ACTH therapy also helped clear up the hypsarrhythmia. The EEG still showed plenty of abnormal electrical activity, though, so Saimi was started on epilepsy medication. She did tend to startle easily, but no epileptic seizures or convulsions of any kind had been observed in her so far, and none ever would be.
From early autumn onwards, we were once again dealing with constant problems with the stoma. The baseplate kept coming loose, and the skin underneath it was in very poor condition. On top of that, the bowel had prolapsed, meaning the visible section of intestine was protruding a few centimetres further than before. The surgeons considered the situation needed correcting with surgery, and at the same time tried a new approach for the stoma. The small intestine was tucked entirely back under the abdominal wall and connected with what’s known as a Malecot catheter. It was basically a rubber tube about twenty centimetres long, with one end connected to a changeable bag that collected the faeces.
The Malecot setup made taking care of the stoma easier. The surgical wound still caused problems, though, as it gave way again within a few days and had to be repaired with another operation. The surgery was done in the afternoon, after which Saimi was taken for intensive monitoring. Because of covid restrictions, only one parent was allowed to be present yet again. During the night, Elli went to the ward’s empty waiting area to wait for Saimi to wake up. When Elli arrived there, she sent me a photo of the lobby, where a television mounted near the ceiling had a still picture from a porn film frozen on the screen. The hospital surely doesn’t have adult channels available, so someone must have, perhaps by accident, mirrored a video from their phone onto the TV and never managed to switch it off again.
After the surgical wound was repaired, an ongoing nuisance was leakage at the point where the Malecot catheter was fitted: often a little stool would trickle out onto her stomach and irritate the skin. The tube would also occasionally get blocked, which made it leak more heavily, and the blockage had to be cleared. We came up with all sorts of creative solutions to these problems, though, and the setup was, in any case, still a considerable improvement on the standard ileostomy she’d had before.
Because of the ACTH therapy and later the operations, we didn’t manage to go on home visits for a few months. Ever since intensive care, Saimi’s physiotherapist, Taru, had been visiting her regularly, and once we were back in hospital more often, those sessions became more frequent too. She did all kinds of positioning, movement and sensory stimulation exercises with Saimi: the sort of thing that aids rehabilitation and supports development and overall function. Despite the covid restrictions, both parents were allowed to be present at these therapy sessions, and Elli and I always tried to be there together. Taru showed us what kinds of exercises we could do with Saimi at home.
Later in the autumn, Taru put together a little “sensory den” for Saimi, designed to stimulate her different senses. Inside, there were various pictures, patterns and textures to touch, in different colours. There were also lights and small toys of different shapes, some of which made sounds too, like a chirping bird. Saimi loved spending time in her den, marvelling at all its little features. The bird’s chirping in particular never failed to bring a big smile to her face.
Taru also brought us toys and children’s audiobooks, which Saimi loved. On one occasion, she brought along a little toy phone whose buttons made all sorts of sounds. One of the buttons started counting: one, two, three, four, five. We noticed that hearing the number “five” in particular always made Saimi smile. The number became a fixture in our everyday life, and we later came up with all kinds of “five games” to entertain her. Of the audiobooks, Saimi’s absolute favourite was “Twinkle, Twinkle, Little Star”, which we read and listened to again and again for five years. As I recall, the following Christmas Taru gave Saimi a copy of the same audiobook as a present. We also gave Taru a small Christmas gift, because we wanted to thank her for all the help, support and joy she had given Saimi and us.
Although autumn and early winter had brought their fair share of problems and setbacks, Saimi’s situation was looking comparatively good again as December approached. Her appetite had grown so much that when she was eating purée, she sometimes looked ready to eat the bib as well. By this point, things were largely falling into place, and the prospect of going home was starting to feel real. We were able to handle the necessary care tasks on our own, and the next step was to prepare our flat for Saimi’s homecoming. An electrician came round to fix the old sockets so they’d be safe to use with the infusion pumps. We also needed a separate fridge for the nutrition bags Saimi received intravenously, which had to be kept at a steady 2–8°C.
We were told that the City of Helsinki’s disability services would issue a payment commitment to cover the cost of the fridge. Things didn’t seem to be moving forward, though, so I decided to just buy a fridge which met the hospital’s requirements, since without one Saimi wouldn’t be able to come home overnight at all. It was an ordinary small fridge, one of the cheapest available. I sent the invoice to the city’s disability services, who were supposed to cover part of the cost of the equipment.
Sanna, the social worker from disability services, eventually decided that the cost would be reimbursed based on the price of a fridge she had found online herself. It turned out to be a low-quality model intended for keeping drinks cool. It was clear that it wouldn’t have been suitable for storing the nutrition bags at all. I pointed out to Sanna what the fridge actually needed to be used for and asked her to look at the guidelines provided by the hospital pharmacist. I also explained that I had already bought the cheapest suitable model available on the market. After that, Sanna made a new decision, settling on a better model than the one I had bought, but noting that it was available more cheaply elsewhere. The fridge, however, could only be bought in person at the Prisma in Imatra, 250 kilometres away.
The baffling way the social worker handled things, wasting her own working hours in the process, infuriated me. I kept wondering why someone whose job was to help disabled and sick children and their families would behave like that. I filed a formal complaint about her decision, and it was overturned, after which Sanna had to issue a corrected decision. At first, I did wonder whether making a complaint was petty and pointless, since the decision didn’t make much real difference to Saimi’s care or our finances. However, I was thinking that problems never change unless someone tries to change them, and that the same treatment would probably happen to other families too if nobody pushed back. I thought that having the decision corrected might pressure the social worker into acting more carefully in future. I was badly wrong. After that, Sanna seemed to stop dealing with anything to do with Saimi altogether, and everything she should have taken care of either went undone or moved at an excruciatingly slow pace.
The effectiveness of Saimi’s epilepsy medication was monitored closely. The level of the drug in her blood had stayed fairly steady from the start, but on one day in December it was suddenly very high, before dropping back to normal again the next day. We asked several different doctors whether anything other than a dosing error could explain the anomaly, and none of them could offer an alternative explanation. Around that time, Saimi also had bouts of nausea and was retching while eating, which was most likely down to the high drug level. Following the nausea, Saimi lost her appetite for purée, and it never came back. It’s hard to prove a direct cause-and-effect relationship between the spike in her drug level and the loss of appetite, but I find it hard to believe the two weren’t connected.
After this unexplained spike, we started keeping a close eye on Saimi’s medication doses and kept finding mistakes. With one of her epilepsy medications, Absenor, an unbelievable reason for the errors came to light, one I suspect also caused the earlier sudden spike in her drug level. Absenor came in two different strengths, and when doses were being measured out, the bottles – or the doses – kept getting mixed up. We were sometimes given doses that were too strong (the stronger concentration measured out in the amount meant for the weaker one) and sometimes too weak (the weaker concentration measured out in the amount meant for the stronger one). On one occasion, during a three-day home visit, I noticed that we’d been sent home with doses ten times too weak. We pointed out the mistake to the nurse every time, but the problem still happened again on several occasions. When we told Saimi’s gastroenterologist about it, she took it seriously and said an internal investigation would be carried out. Later on, as I recall, Pirjo asked for the second bottle of Absenor to be removed from the medication room altogether, just to be safe, since it wasn’t needed on the ward anymore.
It was shocking to observe such a serious problem keep recurring. In principle, such a mistake shouldn’t happen easily, since a trained member of staff in the medication room measures out the dose first, and a nurse then checks it before giving it to the patient. It seems there must have been a fairly careless person working in the medication room, and in the rush, nurses sometimes failed to double-check the dosing. After we spotted the first mistakes, we always checked every medication given to Saimi, and gave it to her ourselves – or pointed out the wrong dose. I’ve often wondered how many times Saimi was given medication at the wrong dose, or how often the same thing has happened with other children.
Around mid-December, the time came to try staying overnight at home with Saimi for the first time. I think we were both a little nervous about it. We were well prepared, but the situation was new in many ways, and there were no nurses if we needed them. We could, of course, always call the hospital for advice. We brought home a drip stand, the infusion pumps, the nutrition bags and a day’s worth of medication, along with a pile of care supplies. At home, the care routines and giving the medication went smoothly, but priming the lines took time and was a bit of a hassle.
We all slept in the same room, with Saimi’s bed and care table set up right next to our bed. Elli and I mostly got light, broken sleep in short stretches, always ready to leap out of bed. On top of the usual care routines, our sleep was also disrupted by the pumps, which made a constant “pulsing” sound as they pushed fluid through the lines. They were also quick to sound an alarm, for instance over possible air in the line, and since we didn’t yet know back then that the alarms were often false alarms, we’d puzzle over every single one for a long time. But most importantly, Saimi slept well and contentedly through the whole night.