Icky

A specimen of Josh's sputum was taken last night, to test for infection, as well as some blood. We wont know for a few days what, if any, infection he has, but they're also trying to work out if there was another reason for his temperature spiking. They've started him on general antibiotics untill they know for sure.

Overnight, around 4.40am, I got up to some of Joshy's noises, and suctioned him. I buzzed the nurse to change the tape on his face that keeps his feeding tube from coming out his nose, and he kept making noises, so I was asking him, and looking around for what the problem could be. I noticed that there was a big wet patch under his nappy, and soon found out he'd made a bit of mess there. So as we tried to clean that up, he started to cough and vomit. (Luckily he was on his side). Meanwhile, he kept pooing. Graphic, I know. The nurse was very calm, while I tried to help, wide-eyed. She asked me to go and get the other nurse, and then suggested I go to the Parents Room (tea/coffee/lounge area) for a while. I got back to bed around 6am, but Josh sounded and looked very comfy. They stopped his feeds, and just resumed that at 1.30 today, after the Doctor's visit.

The Doctor is just generally more positive than the others. He clearly said he doesn't want to give false hope, but said you just never know. Brain injury is so complex and hard to work out. He cited examples of people, one in particular he's seen, where they've just "woken up" and asked for a cigarette! He is also more willing to read through the information we had obtained on the drug Zolpidem. He made it clear that the hospital may not approve of its use, but that did not mean it could not be tried later, under medical supervision. He also asked us not to use the term vegetative. "It's not very nice", he said.

I don't understand though how Josh looks awake, but probably isn't aware of anything. He's unconscious, with his eyes open. But at night, he goes to sleep. It's as plain as any normal 3 year old kid going to sleep. He closes his eyes, and drifts off.

Hard to get a hold on, for sure.

Hearing test is schedule for 17th March. Not sure when the Visual test is yet.

Had another meeting with the NUM today also. Quite happy with everyone, but I have previously requested that the night staff, or most likely the morning staff (since night staff finish around 7.30 and I dont normally get up till 8am), give me a kind of hand over. Basically, I just want them to update me on what has happened during the night, but also where things are up to. I dont know when he last got eye drops, or when he was repositioned last etc. Sometimes I dont even know which nurse is looking after Josh until 9 or 9.30am.

Trying to get John to leave Josh for an hour with either nursing staff, or a Ward Granny at least once a week, so we can have lunch and just chat. I think he'll manage that. Just. But Ive already told him that I'll be taking the other 4 kids out for a couple of hours each weekend, somewhere away from the hospital, and where they have my undevoted attention. It's up to him if he comes or not, but I dont think he's ready yet.