I was just stood over my daughter’s cot watching her sleep peacefully in her ‘big bed’. Last night we built the cot in our room, as we accepted that she has outgrown her moses’ basket. It seems hard to believe that we have reached this milestone already, having been robbed of a number of weeks of our tiny baby, cooped up in a hospital cubicle when we should have been at home. Standing watching her from the end of her cot I was struck by the thought that 8 weeks ago today, at around the same time, I was stood at the foot of a hospital cot in a high dependency unit, watching doctors work to save my daughter’s life. I remember being stood there, watching on without making a sound, my hands gripping the high metal bars at the foot of the cot with silent tears rolling down my cheeks. I recall feeling numb; it was surreal and I struggled to digest what was happening. I had called my husband and told him that he needed to come straight away. I could search a dictionary and never find the words to describe the fear I felt at that moment. It was a fear I had never known, and one I never wanted to feel again. Unfortunately, because of the lasting effects that the illness has had on Freya’s body, that fear will remain with us for many years to come.
I ought to feel elated by the contrast of this morning, and I guess there was a small part of me that smiled inside at the idea that we are home, and had I not made the decision that I did all those weeks ago, what happened on that morning would have been happening at home, and her situation will have been very different. But I can’t help but look at her with sadness sometimes. Watching her sleeping soundly she looks like any other baby; she bears no scars to betray the journey she has been on. If I could see inside her though, I would see that she is broken.
We spent 8 days in our local hospital. All that time Freya battled with soaring temperatures that could not be controlled despite the cocktail of drugs that she was receiving intravenously. She spent the entire week wearing nothing but a nappy, lying in the cot quiet and still. She had daily blood tests while the doctors tested for whatever it was they were looking for. One of the things that they measure from your blood is something called CRP. It is an indication of inflammation or infection. On the day we took Freya into hospital, the CRP count was around 37. By mid-week this had soared to over 300. There was something happening inside her body, but no-one could tell us what. The doctors referred to Freya as ‘septic’, and continued to affirm that they were treating her condition as meningitis and would expect to see some improvement after a few days on the antibiotics. The only real way to confirm bacterial meningitis is through a lumbar puncture, but Freya was too sick for them to attempt the procedure.
Around mid-week, the doctors decided to add a 3rd antibiotic, Gentamicin. On the Thursday, her temperatures started to settle down, spiking a number of times throughout the day as opposed to constant fevers. She was tachycardic, meaning that she had an abnormally high heart rate. She was connected to a monitor that showed her heart rate and oxygen saturation levels (‘sats’) that beeped every time she went over the thresholds set. Because her heart rate was so high – over 200 bpm – they had to set the monitor higher than normal or it would have been alarming constantly. The doctors believed she had turned a corner, the CRP levels had come down a small amount, and they felt she was well enough to undergo a lumbar puncture. By this point, Freya’s symptoms included prolonged fever, a light rash over her body, and dry cracked lips. Her hands also looked very strange, and I remember remarking to the doctors that her hands looked like those of a dead person. They were grey and the skin looked paper thin. They put it down to the cannulas that were inserted in each wrist.
During the course of the week, a number of cannulas were inserted to provide access for the intravenous (IV) drugs. Because their veins are so tiny, babies can prove difficult to cannulate, and they often stop working much quicker than they would in an adult for example. Due to the position of the cannulas and the fact that it is pretty impossible for a baby to keep parts of their body still, with all those jerky arm movements, the cannulas in Freya’s wrists were failing daily, and the decision was made to insert a cannula in her head. The doctors had to shave her hair on one side. They were so cautious about doing that, because apparently some parents have been known to kick off about their child’s head being shaved. Seriously? Hair grows back, why on earth would you want to hinder your child’s recovery because they might look a bit strange for a while. To protect the cannula from Freya’s wandering hands, the nurses placed a plastic cup over it, and taped it to her head. She did look a sight! I have the photographic evidence to show her just how daft she looked!
The lumbar puncture was performed on the Friday, which was our 6th day in the hospital. This was the only procedure that I wasn’t present for. The nurses felt that it was better for me to wait for Freya to return and provide the comfort of cuddles. It is apparently not a pleasant procedure, and the body has to be bent into such a tight ball that to watch your baby go through it can be quite distressing. I paced the corridors, wincing when I heard my baby girl’s cries from behind the doors of the treatment room. She recovered from it pretty quickly, babies are so incredibly adaptable. I remember the nurse passing her to me, and telling me that I had to keep her flat for a period of time. An hour? I can’t recall how long. What I do recall is my complete meltdown at the pressure and responsibility of having to keep my baby still for that period time, and I panicked that I could cause Freya some damage if I were to get it wrong. The nurses were brilliant and reassured me that it would be ok. The results from the lumbar puncture were inconclusive. The white blood cell count was slightly elevated, but there was no confirmation of meningitis. There was a suggestion that because Freya had already had 6 days of high dose antibiotics, the initial condition may have been treated and no longer be apparent in her spinal fluid, although they would still have expected to find some trace of it.
Throughout this first week in hospital, I couldn’t make out how I felt. It is strange because you almost become used to seeing them in that poorly state so it becomes a new normal. Remember we hadn’t had much time with her before she became ill, so we quickly forgot what Freya’s normal looked like. I received mixed messages every day, and wasn’t sure whether I should be scared for Freya, or whether her condition was under control. At one point a nurse came to tell us that they had found rhinovirus in the test of her nasal secretions. She had a cold! Was it possible that it could be just that?! I knew that it was not right that she should be continuing to have a temperature after a week, particularly when she was receiving fluid, 3 different IV antibiotics, and regular paracetamol and ibuprofen. She was too exhausted to feed from a bottle, and had a tube inserted through her nose into her stomach for feeding. She was still being tube fed after a week in hospital which was another sign that she wasn’t recovering. I was so emotional, that every conversation I had with a doctor had me in tears, and I worried that I was only hearing the negative. Prone to automatic negative thoughts, I put that down to me being a ‘neghead’ and tried to bat those thoughts away. It was the Saturday (Day 7) that I relayed one of the conversations with a Registrar to my husband that he decided he needed to hear the news first hand. I had told him that the doctor had said that whilst rhinovirus is a common virus that causes cold-like symptoms in an adult, for a baby as young as Freya it was a pretty nasty virus to have, and there was a chance that was the situation with Freya. However, a consultant later that day said “rhinovirus doesn’t do this to a baby.” The registrar kept saying that Freya was very sick, and I felt that the doctors looked overly concerned whenever they examined her. My husband arranged to meet with the doctor to discuss it. I told him I needed to understand how sick Freya was. I needed to know if there was a chance that she might not get better at all, if she could die.
My husband asked the doctor to tell us on a scale of 1-10 how sick Freya was. The doctor replied that with 1 being healthy, and 11 being dead, Freya was a 10 on the day she was taken to the HDU. She felt that, Freya was now more like a 7 out of 10, and that she was still very sick though clinically more stable than she had been earlier in the week. My husband asked why they were not considering moving Freya to the specialist children’s hospital in a neighbouring town, and she replied that she felt Freya was receiving the appropriate care and that her condition was slowly improving. The following morning, a consultant came to see us. He said that it was unacceptable that we should have a baby as sick as Freya for as long as 8 days without any diagnosis or prognosis for recovery. He said that if it was his child he would not be happy that we were still none-the-wiser about her condition, and that he would want everything possible to be done to ensure our daughter’s recovery. He told us that he had requested a bed for Freya at the Children’s Hospital and an ambulance was on its way to take us there.