Day +86: Febrile To The Max!

The only word to describe the mood in our room today was febrile.

Kid Vampire screamed sporadically throughout the night. After waking Sean at 11.30pm last night, Kid Vampire stopped screaming, as if he was glad that someone else was now screaming in the ward and he could have a rest. It took me until 2am to resettle Sean, before the damn heart rate monitor alarm started ringing loudly. The peals of the alarm woke Sean again, and for the next hour, Sean cried and cried and cried. It took another hour to get Sean to calm down to the point where the heart rate monitor did not sound, and he finally went back to sleep at around 3am.

Kid Vampire started screaming again almost as soon as Sean fell back asleep, which kept me awake for some time. I was beyond exhausted and passed out for what felt like a minute before Sean woke again. The nurses who came in to take Sean's bloods woke him at 6.15am and by this point, there was nothing I could do to get Sean back to sleep. Excellent. Another night with 3 hours of sleep. A total of 9 hours of sleep over the past 3 nights. Bloody awesome.

Sean's temperature hit an all-time high of 39.1°C today. That was the highest temperature ever recorded on Sean, and this included the days through chemotherapy and post transplant. The way Sean's temperature was trending today, there was no chance we would be going home any time soon.

Not only was Sean's temperature a worry, we also found blood in Sean's poo today. Not good. Not good at all.

After suffering through two nights of hell next to Kid Vampire, I all but demanded that we were moved to a different room today. I absolutely did not want to spend another night next to Kid Vampire, as Sean was not getting the rest he needed, and I was getting no rest at all. It was unfair to expect us to put with the screaming, and very unfair of Kid Vampire's mother to expect everyone to deal with her upset child, who was more than happy to vocalise his unhappiness loudly and at all times of the day.

Of course, demanding a room change was one thing; actually getting someone to pay attention to us was another. When I made our demands, we were told to ride it out, to put up with it, and to wait and see if there was a room available. Dr Barbaric told us in no uncertain terms that we would not be returning to C2 West during this stay, as Sean had some sort of a virus and would not be welcome in a clean ward. I honestly didn't care which ward we were moved to, as long as we were not next door to Kid Vampire.

Dr Barbaric was really getting on my nerves. She was totally overloaded, as she was covering 2 other doctors as well as looking after her own patients. She was barely able to spend any time with us, and didn't seem to be closely examining Sean at all. Dr Barbaric may sound like the most sympathetic of our team of transplant doctors, and use a soothing tone of voice, but I was finding her the least useful of our doctors.

Throughout the day, I made comments to everyone who came into our room about how quiet our room was, since Kid Vampire slept for most of the day after screaming all night long. The mother was in the room all day long, but she needed have been as Kid Vampire slept. And stayed asleep for at least 6 hours. I was not looking forward to tonight - if Kid Vampire slept so well during the day, my prediction of him being tired and wanting to sleep tonight were slim to none.

Even though Sean's temperature was high throughout the day, he seemed to be in a much better mood, and he was definitely more playful and chirpy when Dad and Mum came to visit. They were pleased to see Sean in a much better mood, but continued to be worried about Sean as we updated them on Sean's condition.

With me being so exhausted, the nurses gave Jonathan the option to stay the night as well as me. The plan was for me to sleep in the Parents Rest area tonight, away from the screaming and Sean, so I could sleep and be better rested for tomorrow, and Jonathan to stay in our room to deal with Sean if and when Sean woke. We thought about the option for a while, and in the end, I told Jonathan to go home and for us to keep the option up our sleeve for a later date. If Kid Vampire screamed through tonight, then we may well take up the offer tomorrow.

Sean's asleep now and Kid Vampire has already been screeching for a while. I'd been out to the nurses' station to complain, and as much as I felt guilty about making a complaint against a sick child, I just needed the child to stop screaming and screeching. The nurses were apologetic, but there was nothing they could do - neither of us could be moved to a different room, and there were no free beds anywhere else in the hospital. Kid Vampire's mother saw me at the nurses' station, and tried her best to hush her child, but Kid Vampire just kept on screaming.

I'm so tired I can barely keep my eyes opened. I just hope the screaming stops long enough for me to pass out. I need to sleep. Or I may just go next door and throttle the kid. Wonder where I can buy some gaffer tape for Kid Vampire's mouth?