Just after 6 weeks into treatment my fears were realised. Billy had been for a lumber puncture that morning and when we came home he just went downhill. He had seemed fine, obviously hungry but fine. I checked his temperature and it was 37.8. Panic time!!! I looked in the book and it said to check again in 4 hours. I couldn't wait that long, I left it 45 mins and it had gone up to 38.3. I phoned the local hospital who said to bring him straight in.
I wasn't sure what to pack etc so just grabbed a bunch of odd bits, the book and a few things to eat and off we went. What was later to become routine to me, Billy was admitted as we have what is called open access. This means we go straight up to the ward and into a bed. He had to be swabbed, wee in a bottle and then have his port accessed for bloods, again all this would become part of his routine every single time he was admitted.
I was getting a bit jumpy because he just went downhill so quickly and by this point his temperature had gone up to 39. The nurses were fab and just said don't worry, he is in the best place. Although I knew this was true, seeing your child being admitted to hospital for the second time in just over a month is quite scary. Again I was in the position where I couldn't do anything to help Billy and make things better.
The doctors came and took a look at him, listened to his chest, looked in his ears and checked everything. They couldn't find anything obvious so prescibed IV antibiotics which they started straight away. They assured me he would be right as rain within a few days. Billy was lying in the bed so so hot and looking so poorly by this point. He wasn't really interested in food but with a lot of cajoling he drank something.
It was so so scary for me. He looked so so tiny and he was so unhappy, he just wanted me he didn't want to be looked at and poked around. He kept saying his port was really hurting when they accessed it but I was told it looked fine and was working well when I asked for it to be looked at. I was so pleased that we had our own room as it meant I would be able to have some sleep.
It was the start of the half term and we had planned a few things to do so I kept talking to Billy about these to try and keep his spirits up. He just seemed so so poorly, he was lifeless. The nurses said not to worry within a few days on antibiotics he would be well on the way to recovery. He was being given calpol every 4 hours to manage his temperature and then they introduced ibuprofen as his temperature was so high.
It was a night full of worry, every time the drugs wore off his temperature spiked up again. I didn't knwo what to do, i tried stripping him off and putting the fan on him. Nothing worked, the temperature stayed up. I didn't sleep at all just stayed up holding his hand and trying to comfort him, what else could I do.
The doctors didn't seem that worried they thought it was an infection and the antibiotics would work. No one seemed to think it was anything unusual, to me it was a huge deal as it was the first febrile neutrophenic episode we had. And that was the start of a week in hospital....
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