It was that very night between Friday and Saturday, when the fracture got worse, that Saimi’s condition turned from slowly improving to rapidly declining. Or more accurately, it collapsed. The symptoms of her respiratory infection worsened, and her kidney function deteriorated. Among other things, she needed more supplemental oxygen, her urine output dropped and she gained over a kilogram in a day. Saimi’s body had always been in a delicate balance, and the severe injury to her arm seems to have upset it badly. The fracture in itself was not the main or the only reason for her condition. It came down to her underlying illnesses and a chain of unfortunate events, several of them happening at once. Still, the worsening of her arm injury that night seemed to be at the very least a significant factor in her body giving up. I said, I think to Laura, the gastroenterologist, that I hadn’t realised a fracture could be such a serious thing for Saimi. She said no one had known, and that it had come as something of a surprise to everyone.
There was no doubt that the cast had shifted into a worse position and the fracture had worsened overnight, but it was unclear how or why. When I later looked into what had happened that night, I was repeatedly told that Saimi had been pain-free and had slept peacefully. I knew that wasn’t true. I requested Saimi’s medical records from the HUS archives, but time after time I was sent only some of them. I don’t think the archives were trying to hide anything. It was more likely down to problems with Apotti, the notorious patient information system, since I’ve had to battle with the archives over almost every request for information I’ve made. Either way, I had to ask several times before I also received the notes made by the night nurse in question.
According to the report the night nurse herself wrote at the end of her shift, Saimi had been in pain and crying, so she had been given Panadol and Tramal, a strong opioid painkiller. The nurse had also repositioned Saimi several times and emptied her ostomy bag, which was on the same side as her broken arm. The report, however, doesn’t mention the arm, the cast or the fracture even once, which I believe suggests that no attention had been paid to them while she was being cared for.
Saimi didn’t move her arm or change position by herself, and as she lay, her palm was practically facing upwards. The cast simply couldn’t have moved unless some force had been applied to it. It is likely, and in my view certain, that it shifted while the nurse was attending to her. The nurse probably put pressure on the arm in the cast when repositioning Saimi, and perhaps turned the arm out of the way when emptying the ostomy bag. No one has offered me a single alternative explanation, and I haven’t been able to come up with one myself either.
Later, I submitted an official complaint to the hospital. Once again, the replies I received weren’t based on verifiable facts. They talked around the issue without addressing what had happened that night or how the cast could have “slipped” out of place. Instead, I was still being told, for example, that Saimi had slept peacefully and without pain all night, even though in my complaint I had also referred to the night nurse’s own report. They also argued that we, the parents, had wanted nothing to be done to the arm over the weekend, which wasn’t really the case. The very idea that a broken arm could be left untreated because of the parents’ wishes was absurd in the first place. It seemed, and still seems, that healthcare providers can respond with absolutely anything, because no one cares except the people directly affected, and the providers can’t be held to account even for blatant lies.
In the end, the fracture was my fault. Of course, I wish someone could convince me that the injury had no bearing on Saimi’s deteriorating condition and, later, her death. Trying to get the New Children’s Hospital and ward Star to take responsibility for the fracture getting worse through their carelessness has also meant constantly tormenting myself. The easiest thing would be to let it go. But I can’t close my eyes to reality and pretend the fracture didn’t matter, because that simply isn’t true. On top of that, the hospital’s attitude and its outright lying – lies that everyone involved must know to be lies – are intolerable as a matter of principle, and they fuel my desire to keep fighting, even though I know it’s futile.
With the new cast, the swelling in her upper arm went down a little, and the situation with her arm more or less stabilised. The orthopaedic surgeon did, however, think that the bones weren’t really in a very good position. They considered resetting them under general anaesthetic and fitting a better cast at the same time. But because Saimi’s condition was so poor, it was decided not to do anything to the arm or the cast for the time being, as the risks far outweighed the benefits. After that fateful night, instructions for handling her broken arm were added to Saimi’s records – for the first time. Even so, I still had to stop people from moving it carelessly.
The lab nurses, for example, came every day to take samples from her fingertip, and if there was a cannula in her left hand, the sample had to be taken from the hand on her cast arm. They could sometimes be quite firm in their handling, which no doubt usually works better with children than a light or hesitant touch. Once, when I told one of them that she had to be extremely careful with the arm in the cast and mustn’t twist it sideways, she asked in an ironic tone: “So how did you think I’d take the sample?” I stared at her and said that wasn’t my job, and that she should call in someone who knew how to do it safely. I think she understood how serious the situation was, and she managed to take the sample while being careful with the arm.
On Monday, it seemed to me that Saimi was slightly better than the day before. Her weight had come down a bit, and she had been peeing a little more. Naturally, hope came shooting back and pushed the despair aside. By the evening, though, she had taken a turn for the worse again and was feeling miserable. What comforted her most was having us close, with head strokes, touch and soft words. She often became restless and tearful, especially when the nurses came to do something to her, but settled when I gently took her hand, brought my face close to hers and whispered in her ear.
The pain nurse also came by every day to assess the situation, and Saimi was prescribed an opioid painkiller, oxycodone, as an infusion. It calmed her quickly and practically knocked her out. Saimi still loved it when I read her the soundbooks. Once, I was really annoyed when I tried to finish reading one of her favourite books – Laulava puutarha (The Singing Garden) – before the oxycodone kicked in, but I didn’t make it because a nurse bustling about the room kept interrupting us.
We also let Taru know that we were in hospital, and she came to talk to us about positioning. Saimi had to spend much of her time lying down, which in itself causes discomfort and pain, so we wanted help with how to change her position safely. It was the same matter, then, as when we first met almost to the day five years earlier in the intensive care unit at the Women’s Hospital. Being such a positive and smiley person, Taru always brought a little joy with her, even when things were otherwise difficult. When she arrived, though, Saimi was asleep, so we met again a couple of days later and went over how best to move Saimi in bed and in our arms.
The New Children’s Hospital also has a school and daycare. The hospital’s early years teacher contacted Saimi’s daycare and asked her teacher, Sirpa, about their usual daycare activities so she could plan something similar at the hospital. Sirpa must have mentioned that Saimi especially loved crafts and music, because the hospital teacher brought Saimi some crinkly craft paper, and on another day she came to run a short music session together with a parish worker. At my request, they played Saimi’s three favourite songs on the guitar: Pikkuiset kultakalat (Little Goldfish), Pienen pieni veturi (The Tiny Little Engine) and Tuiki tuiki tähtönen (Twinkle, Twinkle, Little Star). I held Saimi’s hand and sang along. I no longer had any trouble remembering the words, since I had sung those songs, among others, to Saimi countless times. At home our repertoire also included a few grown-up songs that Saimi liked me to sing: Where Did You Sleep Last Night, Can’t Help Falling in Love and Paha vaanii (Evil Lurks), as well as the classic Oi mutsi mutsi (Oh mother mother), already familiar from Sant Pau.
The daycare had its own rooms at the New Children’s Hospital, but we were told they were only for patients. Saimi wouldn’t have been able to enjoy them anyway, but we thought Aimi would surely like being able to run around in more normal surroundings than a hospital room or corridor. Outside school and daycare hours nobody used the rooms, so they stood empty, and it seemed silly that no one else could use them then. When we told the nurses on Star that we were disappointed Aimi couldn’t go and play there, they said of course we should be able to. They gave us a key fob that let us take the lift straight to the daycare area and the big playroom. There was also a toy Tesla there, like the ones a charity had donated to the hospital earlier. Aimi loved posing behind the wheel, although actually driving it would still have been a bit too wild.
Saimi’s own care workers still came to the hospital to help us. Early in the week Eija was there for a few hours on a couple of days, and at night there were at least Ave and Julia. If I remember correctly, Julia had joined the day and night care team back in the previous year, but for some reason she didn’t often get shifts, even though we asked for her and, as far as I know, she liked caring for Saimi too. Jana, for her part, came to the hospital every day to help.
On Wednesday morning, Saimi could still cheer up when I entertained her with my chatter and silly voices. When Jana arrived at the hospital, Elli, Aimi and I went out for a walk. We were in Sibeliuksenpuisto (Sibelius Park), less than a kilometre away, when Jana sent a photo showing blood, or some kind of bloody mass, trickling from the corner of Saimi’s mouth. Jana had already pressed the nurse call button, but that only meant someone would come once they could get away from their other work. The room also had an emergency alarm that brought nurses straight away. I quickly replied, “Press the red button on the wall,” and ran to the hospital as fast as I possibly could.
When I got to the room, gasping for breath, it was already over, and there was no acute danger. I don’t remember where the blood was thought to have come from, perhaps from dried-out mucous membranes that had cracked, but it had mixed with mucus that had built up in her mouth. From then on, excess fluid was suctioned from her mouth every now and then. After that incident, I was reluctant to leave Saimi’s side at all, because I was scared that something would happen while I was away.
Of course, we both wanted to be with Saimi, but Aimi needed looking after too, as well as sleep and time to play. A hospital doesn’t offer much in the way of any of that, especially sleep, so Elli took Aimi home for the night, and I mostly stayed at the hospital. When Saimi’s own care workers were there to help, we were usually with Saimi anyway, so towards the end of the week they started looking after Aimi instead. The care workers took her outside, for example, and to the hospital’s play area. We were lucky that we were able to get such help at the hospital.
I had rented a car for the whole week so that I could pop home more quickly whenever I needed to. I also tried going home to sleep in our own bed, but getting to sleep was hard. I kept waking up during the night, phoned the hospital to ask how Saimi was doing, and in the end set off to be with her in the early hours. I knew I had to manage to rest somehow so that I could keep functioning at all. There just weren’t any proper places to rest. The hospital had one quiet room, which wasn’t really suitable for sleeping. There was also a bed in the high-dependency unit, but you needed an access pass to get in, and the bed was meant for the parents of children there. I decided to turn the estate car we had into a place to sleep. I folded down the back seats and laid an exercise mat on top for padding. From home I grabbed a sheet, a duvet and a pillow. I drove the car to the far corner of the hospital’s underground car park and covered the windows as best I could with towels and other bits of fabric. Now and then I tried to sleep in the back, but without much success.
On Wednesday, as evening approached, Saimi grew weaker still. Since the swelling was getting worse and she was peeing less and less, her fluid intake was restricted to very little, and feeding through her PEG button was stopped altogether. The doctors said fluid was shifting into the so-called third space, which as I understood it meant it was leaking out of her bloodstream into her tissues and body cavities. Over the course of the day her breathing also became more laboured, and her oxygen saturation began to drop more than before. A doctor came to talk to us and said that the situation now looked very worrying. Later in the evening Saimi was put on stronger respiratory support, which meant a large mask fitted tightly over her face, with a thick plastic tube running from it to a machine.
Around that time, the ward had assigned Saimi her own nurse, who was in the room all the time. On one occasion, Saimi’s nurse was behind her mobile workstation as usual. She was doing something of her own and didn’t seem to notice anything going on around her, nor was she taking part in Saimi’s care. I needed her help, but she didn’t react at all. I lost my temper and snapped loudly: “What exactly are you here for!?” She stared at me indifferently, with a baffling blankness in her eyes. Then she left the room without a word and came back a moment later to silently collect her workstation. Later I was told that Saimi no longer had a full-time nurse, which, frankly, was a relief.
Jarmo, the senior ward physician, who had taken over Saimi’s care at the start of the week, came to talk to us every day. He struck us as competent and caring. During these visits, he was usually pleasantly calm and unhurried, even though as the doctor in charge of the ward he must have had a great deal to do all the time. He also seemed to genuinely listen to our wishes and thoughts.
On Thursday, Jarmo told us he had consulted several specialists, who considered that the options for treating her kidneys were few, or rather non-existent. Dialysis of any kind, for example, was not advisable, as the risks would outweigh any potential benefits. Saimi would probably never be able to come off dialysis and the ventilator again, so going home after that would be very unlikely. For the same reason, Laura, the gastroenterologist, had already limited Saimi’s treatment so that she would not be given intensive care or CPR, or be intubated. I found it odd that she only told us after making the changes, even though we did agree with her. Perhaps the idea was to spare us from having to make such an extremely heavy decision, which was no doubt wise.
We went over the treatment limits once more with Jarmo and agreed that everything possible would be done for Saimi with the means available on the ward. Among other things, her diuretics were increased in an attempt to get her metabolism working, but her urine output kept falling.
Later, one of Saimi’s nephrologists, Timo, came to see her and talk to us about her kidneys. In practice, he confirmed what Jarmo had said. I already knew the answer, but I asked anyway, just to be sure, whether organ donation would be possible. Years earlier, a cold-hearted nephrologist had planted a question in my mind about whether Saimi’s life would be valuable enough for us even to consider a transplant. Now I would have given my kidney without a moment’s hesitation, but because of her condition that was, of course, not possible. Timo concluded that all we could do was hope the current treatments would take effect.
Timo was a very pleasant doctor. He talked to us with compassion and explained things in a way we could understand. He was also one of the few doctors who realised that parents can – and in my view should – be offered a little hope in a moment of great distress. On his last visit to Saimi, Timo said there was still a small chance that the treatment would start to work and her body would recover, in which case a great deal of fluid might come out. Of course I knew it was unlikely, but at the same time the thought of even the tiniest crumb of hope gave me some extra strength to keep going. I don’t remember his exact words, only the mirage of hope they offered. What I do remember vividly is the irritated look on the face of the nurse who was in the room at the time, and how she shot out after Timo as he left. I suspect she went to tell him off for giving false hope.
Just as five years earlier, we were once again in hospital over Easter in an extremely difficult situation. During the holiday, the hospital would run for four days with fewer resources and only on-call doctors, which in practice meant waiting for normal working days to return and hoping nothing major would change before then. However, one small comfort was that Laura, the gastroenterologist, was on call, so at least for part of the time there was someone on hand who knew Saimi.
On Good Friday, Laura came to talk to us about Saimi’s overall situation. The night before, Saimi had been in more pain, and the swelling had got even worse. She now weighed over nineteen kilos, when her normal weight was around fifteen. Her liver, kidneys and bone marrow didn’t seem to be working well, and her body was running out of strength. Laura said it was unlikely that Saimi would recover to how she had been before. We agreed that Saimi’s wellbeing and freedom from pain were what mattered most, and that there was no sense in giving treatments that would mainly cause more suffering.
The respiratory support mask that had been put on Saimi the evening before last was clearly very unpleasant for her. It also disturbed her sleep and made it harder to hold her in our arms, and especially to touch her face, which she loved. Laura gave permission to return her to the lighter nasal prongs so that Saimi would be more comfortable. This meant accepting that her oxygen levels might sometimes drop a little further, although she would be switched back to the stronger mask if needed. We also discussed the benefits of a red blood cell transfusion, as her haemoglobin had once again fallen very low. Laura seemed reluctant to prescribe any more transfusions, but in the end we agreed to do it one more time so that her oxygen supply would be as good as possible after the change. Finally, Laura pointed out that if and when her haemoglobin went down again, it would be a sign that her bone marrow’s own red blood cell production was weak, and that repeated transfusions would not help Saimi.
On Good Friday, it began to look very likely that Saimi would not be coming home with us. Only seven days earlier, we had been hopeful that we would already be home by now, although it felt as if that had been weeks ago at the very least.