I wonder if I will ever not be afraid to wake up. I sleep well, perfectly well in fact. Freya fell into a 4-hourly feeding routine in line with the nurses timetables for observations and started sleeping through the night towards the end of our stay. She would even stay asleep for her observations, hardly flinching when the blood pressure cuff tightened around her chubby little legs. She’d take her oral medicines without a murmur, sucking away on the syringe and settling straight back to sleep. Now we are home, she is sleeping from around 7pm to 7am, and the move to her cot didn’t phase her (although I guess a big cot has become more familiar to her than a moses basket since her hospitalisation). She sleeps so still and quiet that i cannot help but fear the worst, and I keep my eyes squeezed tightly shut until I hear a murmur or a breath. Sometimes I have to physically touch her to encourage some kind of movement to reassure myself that she is ok; that she is still here.
It isn’t an unusual fear in the early months of a baby’s life though is it? I remember checking my other two were breathing constantly whenever they were sleeping, especially when they started taking their naps upstairs. We have a baby monitor, but she is so quiet that it doesn’t provide much reassurance. For the first six months at least, most mothers will harbour a fear of cot-death, and secretly (sometimes publicly) celebrate the milestone being reached without their baby coming to any harm. This for us has been a very real fear, with the chances of the worst happening increasing as a result of her illness and its effect on her body.
When I hear her first sound or see her first movement after a period of sleep, I breathe a sigh of relief and thank a God that I don’t believe in for keeping her safe for one more day. I count my blessings that she is still here with us, and think of all the moments when things might have been different. Imagine not taking her to the hospital on Day 1! Imagine not even making the call in the first place! I was worried that I was over-reacting, worried that I would be putting strain on an already struggling Accident & Emergency function, worried I would be judged as a hypochondriac; one of those mothers. My mother-in-law, who was once a nurse, told me not to take any chances and to trust my gut. She said it didn’t matter what anyone else thought, it was better to get her checked out and it be nothing, than not to check and risk her becoming more poorly. How right she was.
I often think about all the times people have said to us “she’s in the right place”. Firstly, she wasn’t in the right place. The right place was home with her family doing normal things. Secondly you might assume that if you are in the right place, the right things would always happen. That wasn’t always the case, and I was often glad that I am blessed with some intelligence, an inquisitive nature, and unfaltering tenacity.
I am by no means critical of the medical profession in it’s entirety. On the whole, the medical staff from cleaners to consultants and everything in between were amazing. There were however, a few occasions where it paid to be nosey, to take an interest, and to keep notes (mental or otherwise). The first of these occasions happened on either Day 2 or 3 of Freya’s illness. I can’t remember which day, but I can remember that we were still in the HDU so it had to be the Monday or Tuesday night. As Freya’s nurse was administering her IV medication, she commented that the cannula had tissued. In layman’s terms, it was no longer in the vein and therefore any fluid was entering the tissue surrounding the vein rather than being delivered into the bloodstream. It had to be checked and/or removed, and a new one would have to be inserted before she could receive any further medication. There was a cannula in the other wrist, but it was in such a tenuous position that it was not successful for the IV medication delivered through the pump. The nurse did a thorough handover as it was at the end of her shift, and I felt as happy as I could be with the arrangements that had been made to keep Freya safe and aid her recovery. That evening we were looked after by a bank nurse. I asked on a few occasions when her next antibiotic dose was due, and reminded her that she needed a cannula inserting in advance of that. Because she was difficult to cannulate, the nurse eventually called the on-duty doctor to come and insert a new cannula so her drugs could be given.
The ‘doctor’ arrived, and I use inverted commas because there was no name badge visible and she didn’t introduce herself so to me she could have been anyone. Add to that her physical appearance (which I will not describe for fear of offending anyone), and the rancid smell, and I really had to wonder who they had sent to my daughter’s aid. She took a look at her patient and commented at how many cannula sites she could see (I mentioned in my last blog how quickly they kept failing), and she said that she wasn’t prepared to insert another as it was unfair on Freya. I asked how they planned to give her the antibiotics without any access, and she replied quite nonchalantly “Perhaps she doesn’t need the antibiotics.” I felt like I had been smacked in the face. A few hours before, a senior nurse had given me a clear explanation of what to expect, what care they were giving and why they were giving it. I felt confident that Freya was in good hands and that she would recover soon. In one moment, and one blasé statement, that ‘doctor’ knocked any confidence I had out of me. I immediately jumped to Freya’s defence and the fatigue and stress forced a rather angry response. I remember very loudly saying something along the lines of “Do not walk in here with that blasé attitude and tell me that my daughter does not need the medication that this morning I was told would save her life.” Immediately she said she would put a cannula in, and again I stopped her; “Hold on just a second! When you came in you felt it was not right to cannulate her and now because I question you, you flippantly say you will do it. Why say it is wrong, then back down so easily when I challenge you?” She spoke in a very thick accent, so it was hard enough to understand her that day, without trying to remember today, but I got the impression that she felt that I was afraid that a cannula would hurt Freya, and the nurses tried to usher me away for a cup of tea because apparently my reaction was down to tiredness. I retorted with “Trust me, I am not tired. No amount of tiredness would change the fact that right now I have no confidence in the care you are providing, and I am not leaving my daughter alone with her!” In the end, they tested the cannula that had failed, believed it to be working ok and ‘pushed’ the drug through manually at the instruction of the ‘doctor’. Once she had left i made it clear that if that ‘doctor’ (who was not actually from our local hospital) ever came near us again, I would wheel Freya in her cot right out of the front doors! I never saw her again.
Luckily incidents like that one were rare, but there were times when I was thankful that I had paid so much attention to Freya’s care-plan. There were a number of occasions throughout the course of our ‘incarceration’ when I was required to remind the nurses that Freya was due some medication. Sometimes I would be met with a casual “I was waiting for her next feed”, but that never washed with me as I had all the milk in our cubicle, the nurses didn’t know when Freya was feeding, and on one occasion when I received that response I had only fed Freya an hour before. Had it have been an antibiotic that wouldn’t have been critical, I might not have been so cross, but when it is the drug that is responsible for reducing the risk of further complications with her heart it was a different matter.
Another time, Freya was due to receive some essential medication (once we had moved to the specialist hospital and a diagnosis had been reached). It had to be delivered as one dose, but over 2 days due to Freya being so tiny. Because we were being transferred to a 2nd specialist hospital the following morning, it was important that the medication was delivered at 4am, being a drug that took at least 4 hours to ‘infuse’ through the IV pump. At 5:30am I woke up and noticed that there was no IV going in. When I asked the nurse, she replied that it was one dose, and Freya had received that the night before. I corrected her, telling her that the dose had to be split and that it needed to be started at 4am so it was delivered before the ambulance arrived to transport us. I overheard the phone call from the nurses station, working out how to rectify the situation. The drug was given, and our transfer was delayed.
I guess that was a bit of a long-winded way of saying that when you put your life in the hands of medical professionals in a hospital, you do indeed believe that you are in the right place. Over the 6 weeks that Freya was in hospital care, we encountered numerous medical staff. Freya spent her 6 weeks in 3 different hospitals so we were also able to draw comparisons between staff and the physical environment. I would say that 99% of the time we were in hospital, Freya was cared for incredibly by some amazing staff who proved through their actions why they were in the profession. There were a tiny number of nurses that I felt less warmth from, or felt that they were desensitised, lazy even. I will not allow my view of the NHS as a whole be shadowed by the behaviour of a few less capable nurses. But I will say never assume that they all know best. Do your research, but be discerning about where you get your information from. Ask questions, make notes, and ask again and again until you understand. With an illness like Kawasaki Disease, it is possible that many disciplines will become involved. Freya receives follow up care from Immunology, Rheumatology, Cardiology, Gastroenterology and a Dietician. They are not always joined up, sometimes making decisions that contradicted the care being provided. At the beginning of this journey I was reluctant to ask questions for fear of offending the doctors, I bottled my concerns up because I didn’t want them to think I was over-reacting. Freya could not fight her own corner. I soon learned that if she was to stand a chance, she needed her mother strong and bold, and beside her every step of the way.