Another day, another trip to hospital, we'd been home from Alder Hey only 6 days. This time Warrington Hospital A&E for a very suspect rash on Bethany’s leg. I’d been for a trip to the Trafford Centre that morning with a good friend, Bethany’s uncle Stu and the three of us were having a lovely day out. We stopped at one of the many benches as it was dinnertime and I took Bee’s little combats off to access her peg for a tube feed. It was then I noticed the rash. Only on the lower of her right leg, it was blotchy with large spots and wasn’t like anything she’d had before. I ran my fingers over it and applied some pressure, it didn’t fade. I felt a ripple of concern but decided not to panic, Bee wasn’t ill at all, in fact she was in her usual great spirits and one of the first indicators that Bethany will be ill is her becoming subdued and irritable. We continued with our day and I resolved to take her immediately to A&E should the rash get any worse, otherwise we would take her at end of the day if it did not fade. We had some shopping to do: it was Foz’s birthday the following day and I wanted to get him some nice things.
Coming to the end of our trip Bethany’s rash had not faded, although she was still laughing and smiling for us. I decided to err on the side of caution and take her to A&E. Bethany does not deal well with respiratory infections, they hit her really hard and the dreaded M word would just be devastating for her. Stu took us home first to drop off our purchases and get together an overnight bag just in case, for some reason Bee’s trips to hospital are never short, then dropped us at the entrance to the hospital. In the bag I'd packed Foz's presents, wrapping paper, sellotape, scissors and his cards. Multi-tasking is something I'm getting good at!
Of course we’re not hugely familiar with A&E’s system and so we just went straight to the reception desk. Stood around for 5 minutes waiting for the person before us to be done then got our turn, only for the receptionist to tell us that we should have took a numbered ticket by the door. Bugger. Foz sat with Bee while I went and found the ticket thingy and took a number. Meanwhile the people behind us were now being seen to; it’s a good job Bee wasn’t in a critical condition. I’m sure the system works fine when A&E is crowded and the receptionists need some order but when there is a grand total of 5 in the waiting room it seems a little superfluous if not a complete waste of time. Finally, after being there for 20 minutes (if you can believe it) we were finally ushered forward by the receptionist. I gave all Bee’s details and a summary of the problem and we were pointed in the direction of the children’s A&E.
We traipsed down the corridor and were shown in to the waiting room. It had been painted since the last time we were there, fairly recently too as the room smelled of fresh paint. We sat and waited. After a while we had to strip Bethany for weighing. She chattered and smiled the whole time. It’s very hard to convince a doctor that your child is ill when they are so pleasant! After her weigh session we went back to the waiting room. I put her vest back on and wrapped her in a blanket, knowing that a doctor would only undress her again. After some more waiting a nurse finally came for us. We were shown into a cubicle, endured some more waiting and finally the doctor followed us in. He had a good look at the rash on Bethany’s leg, "hmmm-ed" and "ahhh-ed" for a few minutes, poked and prodded and generally gave it a through look. We waited with baited breath; “nope I’m not happy with that”. Not exactly the reaction we were looking for. We’d much rather have heard that we were being paranoid, obsessive and generally overreacting. But no, straight from the doctor’s mouth: there’s something not right. He quizzed us a little and we explained about the Kabuki Syndrome, about the weak immune system, about her susceptibility to respiratory infections... He listened and nodded a lot and finally concluded that he needed to get his colleague to come down from the ward to have a look. Great, more waiting. This time with the added stress that it was more than just paranoia, there might be something seriously wrong. When the doctor left to make the call it all got a bit much for me and I had a good cry. Meningitis. Bethany might have meningitis. I couldn’t believe it. The most dreaded of all childhood illnesses, the one we’d do anything to avoid. Bethany might actually have it. Even healthy children die from meningitis. What about my baby? My poor baby with the weak immune system. How would she fight it? During the wait we overheard a nurse talking about a Swine Flu patient a couple of cubicles down. Great. Not only suspected Meningitis but exposure to Swine Flu. What a wonderful evening. I’d been avoiding Tiny Stars (our mum and baby group) since the Swine Flu furore as Bethany catches things so easily and here we were, exposing her anyway.
The doctor came back and told us his colleague would be down shortly and in the meantime he was going to take some blood tests, obviously the main one being a meningitis test and the others for various things. Over came the dreaded trolley and out came the needles. Bethany is notoriously difficult to get blood from. Her veins just collapse every time. I’ve not met a single medical professional that has been able to do it first time. Normally they put numbing cream on both arms, both hands and both feet for good measure. At least two of those places are usually attempted at. This time the doctor insisted there was no time for numbing cream (it takes half an hour to work) and so we steeled ourselves for the trauma to come. Unfortunately the cot was against a wall so once the doctor and a nurse were leaning over Bee there wasn’t any space for Foz or myself to get near to comfort her.
The first arm. After much digging around with his needle and screaming from Bethany, the doctor decided that there was no suitable vein there. Out it came and he tried a second place in the same arm. He was not gentle. By this time the tears were streaming and I was doing my very best not to break down and sob. Listening to her scream and seeing her being held down by a nurse was awful. Nothing in the second place either.
The second arm. No luck. Luckily his beeper beeped and he went away to answer the call. I picked up my distraught baby and tried to calm her down, dreading the doctor’s return. Our second lucky break came when his colleague showed up. He came to look at Bethany and confirmed what the first doctor had said. It looked like a meningitis rash but as Bethany was not ill, might not be. We were to be admitted to the ward overnight for some monitoring and to wait for the results of the blood test. I knew that overnight bag had been a good idea. Unfortunately they still needed the blood from Bethany, yet our third lucky break came when the second doctor, who had a much nicer bedside manner, took over. Thank goodness he finally managed to get some blood from Bethany’s second arm and was much gentler about it. They took the blood away and we waited for a bed on the ward to be free. Finally the nurse took us down. It was nice to see all the nurses again, most of them remembered us from our stay in May when Bethany had bronchiolitis. We ended up in a room we’d been in before, only this time I had a camp bed on the floor: no more sleeping in the chair! Bliss!
Various staff came in and out through the evening. Foz left fairly early as he relies on buses and they are very infrequent after a certain time. Which left me and Bee, who of course wouldn't sleep a wink. The naughty child. The doctor informed me that he'd need more blood from Bethany but this time they would use the numbing cream to try and ease the stress for her. It was put on and covered in plasters to stop it coming off. Unfortunately Bethany picked this time to decide she was reallt tired. She didn't sleep long before the doctor was ready to come and take some more blood. Thankfully this time was as stressful although Bee did still scream and scream. The doctor had no more luck getting the blood from her and it was decided that she had had enough for one evening, no more tests. I was so grateful, my girl needed some rest. Of course by this time she was exhausted and it wasn't long before she was asleep. I placed her in the cot and tucked her in.
The doctor came to see me as the first of Bee's blood tests had come back. It wasn't the meningitis test, which would take a couple of days, but it was an 'infection marker'. As this test showed Bee had no infection the doctor could fairly confidently say that it wasn't meningitis. Bethany was just not showing any other symptoms except the rash, which was still there. If she was still well in herself the following day we could go home. Joy! Only an overnight stay! I could scarcely believe our luck! It meant although we wouldn't be with Foz on the morning of his birthday we would at least still get home that day. With no more news coming that night I settled on to the camp bed to wrap Foz's presents and write out his cards.
The following morning I made a quick trip down to the hospital shop to buy some balloons, the plan being to decorate the room. Through everything it was still important to remember it was Foz's birthday. I blew them all up and sellotaped them round the room, placing Foz's presents and cards on the table. He came to join us towards dinnertime and we had a mini-birthday in Bethany's hospital room. Later that afternoon we were able to go home. Joy. Another scare but thankfully nowhere near as bad as we feared. Still no real explanation for the rash, the doctors put it down to something viral. The meningitis test came nack negative a few days later. We were in the clear.