During the surgery, Saimi was given an ileostomy, which meant that the end of her intestine was visible on her lower abdomen. My memories from those days are foggy in many places and I can’t even remember where we slept, or whether we slept at all, but one moment stands out clearly. When Mikko, a professor of pediatric surgery, came to examine Saimi’s stoma, he walked over to her, took a glance at it, and immediately wrinkled his nose. There was no need to say out loud that Saimi would need a third surgery. In my memory, the visible section of intestine was very dark and dry. I had never seen a living intestine before, but I later learned that a healthy one looks just about the opposite.
Saimi hadn’t even recovered from her previous surgeries, so a third would be especially grueling and dangerous, but it couldn’t be delayed. Saimi underwent her third surgery on the Tuesday of Easter week, that is, barely two days after the previous one. This time, at least, the operation was performed in a somewhat planned manner during the day, and Mikko, who was on duty, carried it out. We prepared for the worst and said our goodbyes to Saimi, because there was a high risk she might not survive. We held her hands and told her we loved her, over and over again. I hummed the melody of Hey Jude by the Beatles, which was playing in my head for some reason. That moment left such a strong emotional imprint on me that even now, whenever I hear that song, my eyes immediately fill with tears.
It was so hard to leave Saimi’s side and let her go into the operating room. We were taken to a small room in the intensive care unit, where we just sat in armchairs and waited for news. I don’t remember the last time either of us had eaten, but we were both starting to feel faint. Elli had pumped a couple of small bottles of breast milk earlier, and she had them with her. Eventually we decided to drink the milk, which helped a little and the worst of the shaking stopped. I have no sense of how much time passed in those agonizing moments, but eventually Saimi’s doctor, Samuli, came hurrying in to tell us the surgery had been a success and that Saimi was doing reasonably well given the circumstances. He seemed genuinely relieved himself and happy to be bringing us good news.
I have no memory of the hours immediately following the third surgery and for instance, I don’t remember speaking with Mikko afterward, although we probably did. I guess at that point, we were running on autopilot. We had only been in the intensive care unit for about three days, but every single moment had been so intense that it felt as though we had already been there for weeks. The lack of sleep and the relentless fear had worn us down, but adrenaline was probably keeping us just about functional.
Ultimately, most of Saimi’s intestines had to be removed, leaving her with just twenty centimeters of small intestine. However, above all, we were just relieved that she had even survived the surgeries, and that we at least had hope again. Unfortunately, that relief was short-lived. My memories pick up again later that same afternoon, when Saimi’s blood sugar dropped very low. The doctors worked frantically to figure out what was happening and to normalise it, but nothing seemed to help. We were told that prolonged hypoglycaemia, that is, very low blood glucose, is very dangerous and can, for example, cause damage to the brain.
Next to Saimi’s bed were infusion pumps delivering medications, nutrients, and fluids directly into her bloodstream. Below the pumps was a little shelf, and at some point I noticed there was liquid pooling on it. I mentioned it to the nurse caring for Saimi, but she just said something had probably spilled there. At that point my trust in the medical staff was still strong, and it didn’t occur to me to think about it any further. It wasn’t my job to monitor the pumps, of course, but I’ve blamed myself since for not insisting that it be checked immediately. It was only later that evening that someone on the staff decided to take a closer look at the pumps and discovered that a syringe in one of them was not properly connected to the tubing, so the fluids and medications had been leaking out underneath. Once the connection was fixed, Saimi’s blood sugar normalised within fifteen minutes.
Saimi’s blood sugar was critically low for at least six hours. Later, when I looked into what the consequences hypoglycaemia can have, I found older animal studies in which similar glucose levels sustained for the same duration had caused severe brain damage or brain death in monkeys. At the time, I didn’t fully understand how serious it was. And in the immediate aftermath, it seemed as though Saimi had once again pulled through a truly dire situation.
The next day, Samuli apologised and said that, of course, something like that should never happen. He told us that a safety report had been filed, and that we could later apply for compensation if any consequences from the medical error emerged. The nurse who had prepared the pumps also apologised sincerely. She said she would understand if we didn’t want her to care for Saimi anymore, but we told her that as far as we were concerned, she could continue as Saimi’s nurse. I did not blame her then, nor do I blame her now. To us, she seemed like a responsible nurse who was good at her job, and I am certain she did her best during her shift, but for some reason, the tubing had come loose from its connection. Furthermore, when I think about it now, the nurse who came on the evening shift after her should have checked the functioning of the pumps, which she did not do, even when I pointed out the liquid beneath them. She also never apologised to us for what happened.
The nurses repeatedly reminded us that Saimi needed to be allowed to rest, and that we should avoid disturbing her sleep. When Saimi was asleep, we usually tried to rest as well, lying in our own bed waiting for her to wake up. Whenever Saimi was awake, we were by her side, and just the day after her third surgery, we were able to take part in her care together with the nurse. We also received permission from the surgeon to moisten Saimi’s mouth with a cloth dipped in breast milk. Saimi’s mouth was constantly dry, and she clearly enjoyed sucking on the milk cloth. It was a small but comforting activity for the whole family during those days.
Saimi’s care required various intravenous medications, fluids, and nutrients, so she had multiple cannulas inserted to deliver them directly into her bloodstream. There were cannulas in her hands, feet, and head. Saimi’s blood vessels were still very thin, and the cannulas would fail from time to time, that is, the needle would slip out of the vein, which meant they had to be reinserted every now and then. Placing a cannula was challenging, and watching the procedure was nerve-wracking for both of us. It often took many attempts before the cannula properly hit the vein, and every attempt was painful for Saimi. Once the cannulas were in place, they were protected with gauze, which was removed every now and then to check that the cannula was still working. One time, however, a nurse failed to notice that the cannula in Saimi’s ankle had failed and the nutrient solution had been leaking into the surrounding tissue for some time.
Her leg looked terrible and would surely have been extremely painful if Saimi had not already been receiving fentanyl, which is a strong synthetic opioid. First the leg was very red and swollen, but later a hole formed next to the Achilles tendon as dead skin and tissue were removed. The leg took a long time to heal and actually never recovered fully. The ankle remained tight and was always left in a slightly extended position. A few weeks after the cannula injury occurred, a plastic surgeon examined the leg to assess what kind of aesthetic damage the injury would leave behind. I don’t remember whether I said it out loud or just thought to myself that the scar on her ankle would surely be the least of Saimi’s worries in the future.
Saimi had been in the intensive care unit for less than a week, but terrible events had followed one after another at a rapid pace. At least, the damage to her leg was not life-threatening, but it was distressing and caused a lot of pain. Furthermore, it happened just before Easter, which felt unbearably long anyway, as the hospital was operating under on-call doctors for those four days. Throughout Easter, we basically just waited for the weekdays to return and hoped fervently that no more setbacks would occur during the holidays, because even though there were positive signs in Saimi’s condition, the situation was still critical. The means to support her kidney function were limited, and in practice, we could do nothing but wait and see how the situation developed. Around Easter, Saimi was still very swollen and weighed about two and a half kilos, whereas before the surgeries, she had weighed less than two kilos.
Over Easter, we were still both allowed to be at the hospital at the same time, although we were constantly reminded that the exception would not be extended much longer. We were by Saimi’s side all the time. At one point, I made a quick trip home to pick up more clothes for us, but otherwise, we basically left the room to wash up or eat. I think we were afraid to leave Saimi’s side, as we were probably waiting for the next catastrophe to take place at any moment. Fortunately, for the time being, no such thing happened. Quite the contrary, the available treatments, or perhaps Saimi’s stubborn fight, brought about positive changes, and Saimi’s condition clearly began to improve.