Nothing much seemed to happen in the first week of Freya’s illness whilst we were under the care of our local hospital. They were very much focussed on treating the suspected cause, and although they had no evidence at that point they continued to treat for sepsis and bacterial meningitis. Freya was too unwell to undergo a lumbar puncture, so they continued to take blood to monitor the levels of infection in her body and waited for something to grow in the cultures in the lab. Nothing grew.
On Day 4 (3rd June), the decision was made to use Freya’s head for the next cannula site. I mentioned before that the doctors were quite sheepish about shaving her head, but one thing about me is that whilst I am incredibly emotional and sensitive, I am also very level headed when it comes to the necessary, and providing more stable IV access was exactly that. It was on this day that the new antibiotic (Gentamicin) was added into the cocktail. It is my understanding that it is a more potent broad spectrum antibiotic, but I never really did any research into the medication. In fact in that first week I did no real research at all, only using the internet to search medical terms I was unfamiliar with, or to prepare myself for what a lumbar puncture involved for example. My research skills came into play once we had a diagnosis, which would not come for another 9 days.
Having a cannula in Freya’s head wasn’t nice. It felt a lot harder to handle her, although she seemed to be in pain whenever I tried to pick her up so we weren’t handling her much at that point anyway. It was trickier trying to lay her back down, because the cup that was stuck over the cannula site to protect it kept falling backwards and I’d end up digging it into her head as I laid her down. I think it was the same day that we took her for an ultrasound of her head, chest and tummy. I wheeled the pram down to the ultrasound unit and the nurse wheeled the IV trolley. As I pushed the pram over the threshold of the scan room, I got too far away from the nurse and the cannula tube in Freya’s head was tugged, making her cry out in pain. I broke down in tears. Here was my baby in enough pain and discomfort already, and I go and hurt her through my carelessness. I was embarrassed and upset, but the nurse was great about it (this wouldn’t be the first situation like it, but I’ll save that one for later!) Everything looked ok on the ultrasounds – another dead end.
The days pretty much passed like that, uneventful, Freya not getting any better, blood tests showing nothing but elevated white blood cell count (and other things that I never understood) but never any diagnosis. I stayed with Freya for the most part, going home on Day 7 to get some rest at home, and spend some time with our other two children. On Day 6 (5th June), Freya had her lumbar puncture – I’ve already told you that was also inconclusive. The night I went home was the night that my husband had a conversation with the doctor who spelled out to him how sick Freya was. The next morning, my children had their first visit to the hospital. My daughter had been away on a school residential, and my son was missing the iPad more than us, so we had managed to keep the situation away from them. We told them that Freya had a cold, but that she was too young for us to give her medicine and it had to be given at the hospital. The first week was a novelty to them, so they bought that story. It was that afternoon that we were transferred to the specialist children’s hospital and Freya had her first trip in an ambulance.
That evening, my best friend (who also happens to be my sister-in-law) brought me a journal and a pen, and a little collection of inspirational quotes tied together with a pink ribbon. She knows that I find it therapeutic to write and knew that I was finding it difficult to blog from the hospital. That night, once Freya was settled and sleeping, I wrote my first entry.
“I am sat on my bed next to your cot, listening to your snuffly breath and watching your little tummy pump up and down, helping you to breathe. Your tiny body is working so hard, fighting the infection and battling to bring that temperature down. I cannot imagine how you feel. Are you in pain? Are you frightened? What do you make of all this poking and prodding? At tubes going in and tubes coming out? Do you feel the cool liquid pumping through your veins as the antibiotics are delivered to support you in your fight? Does it scare you when the machines start to beep? What do you make of all these new faces? Of doctors and nurses and everything in between? If I try to put myself in your situation, I cannot fathom the thoughts that would be in that little head of yours. As an adult I would be scared, lonely, in pain. How much that are you feeling, little one?
When the nurses come to take your blood and you stare right into my eyes do you know that it isn’t me that is causing you the pain? Do you know that I would take it all away from you in a heartbeat; that every physical thing you have to endure causes a fissure in my heart that feels like it will cause it to break in two? Do you know that I am there by your side for every procedure because I feel that if I am there with you sharing the experience, I can feel some of your pain. Do you know how my heart breaks every time I hear you cry, or see your scared eyes pleading with me to make it go away? I would trade places with you in a heartbeat.
I pray that you will get well, and that you never, ever have to go through anything like this ever again.”
That night Freya took her first full feed from a bottle. Things were looking up and I sent a postcard to the local hospital to tell them so.