Day +87: Two Steps Forward, One Giant Step Back

A much better day was had today, as we all managed to get some much needed sleep.

Amazingly, Kid Vampire slept last night. Yes, he slept, at night, and pretty much through the night. The long sleep he had during yesterday must have whet his appetite for more sleep last night, and the entire ward including patients, carers and staff were grateful for the respite.

Trust me when I say that we were not the only people suffering from Kid Vampire's screaming and screeching through the night. Kid Vampire was so loud that whenever he started up his complaining, it woke all the other kids in the ward. I was not the only patient's carer who wanted to shut Kid Vampire up, and certainly was not the only person to have complained about his behaviour. No wonder his mother did not want to be seen on the ward.

It wasn't an incident-free night though, with Sean spiking a fever of 38.5°C at 4.30am, around the same time the NG tube was blocked. The nurses and I tried our very best to unblock the tube, but our efforts only made Sean even more awake than before, so after two different pumps and various flushes later, we abandoned the idea of the continuous feed and switched off the machines. After some cuddles, Sean went back to sleep and stayed asleep until 7.30am.

Sean's temperature improved after he woke - it dropped to 38.1°C, and it kept dropping, to a low of around 37.3°C. We were so happy as he was doing so well, and we started hoping that we might be home tomorrow night.

The doctors told us they had identified a bug in Sean's gut called (clostridium difficile or C diff). The blood in Sean's poo made them think something was going on in Sean's gut, and after identifying the bug, they would now treat it with metronidazole, an antibiotic we'd been prescribed in the past. The bug would explain the diarrhoea and the loss of appetite, and possibly the fever as well, and I made a mention of this to the doctors, but they felt the virus was most likely caused by the use of the general antibiotic that was given to Sean on admission, which stirred up a few things in his system and gave this virus a road to develop.

Dad and Mum came by again, and were pleased to hear that Sean was improving after the earlier setback. Everyone was hoping for a hospital discharge soon. We'd all had enough, especially Kid Vampire and his antics.

We found out from some of the nurses that one of the reasons Kid Vampire's mother was out of the room so much was because she was't feeling well. I did feel for her - Kid Vampire was obviously in hospital because he had to be, because he was ill, but it wasn't fair to anyone for her to be away from him for lengthy periods of time, especially when all he wanted was his mother. I'd often felt unwell and sick of being in hospital with Sean, but if Jonathan wasn't around, I would never leave Sean in the room by himself.

I lied. I had left Sean in his room by himself on two occasions, during transplant, when I was busting to go to the toilet first thing in the morning and Jonathan had not yet arrived to join us. I'd rung the nurse call bell, and waited for someone to arrive, but when no one was available, I'd raced out to the toilet, relieved myself, and raced back to the room. Sean would become incredibly upset in the 2 minutes I was away, and would scream the place down.

Kid Vampire was a bit older than Sean, perhaps by about 12 months. Still, whenever his mother left the room, he screeched and screamed until she returned. Being away from her son for an hour or or so to recharge was fair - being away for the whole day was not fair, on anyone.

I tried to give Kid Vampire's mother the benefit of the doubt, and not get so upset with her. Perhaps she had other children she needed to go home to look after. Perhaps she was a single mother. Perhaps she wasn't from Sydney and they had travelled a long distance to be at the hospital. But in the end, when we had to put with Kid Vampire's screaming and screeching for hours on end, the niceties went flying out the window and left me (and quite possibly every other person in the ward) completely unsympathetic and resentful towards her.

The rest of the afternoon was uneventful. Sean's temperature remained stable, and we watched TV and had cuddles and rested. I started looking forward to being home before the weekend finished - it would be nice to be back in my own bed.

I spoke too soon. Or hoped too soon. All hopes of going home by tomorrow afternoon have been dashed. Sean's temperature taken around 8.30pm showed 38°C. The nurses took blood cultures for testing and we now had to wait another 48 hours before the doctors would consider discharging us.

To top things off, Kid Vampire has been screeching for the past hour. I really hope he wears himself out with all this screaming and passes out soon.

We're never going home. Boo.