Well we are going to be here for at least 72 hours. Usually it’s 48 but it’s clear things are worse than normal.
They can’t work out if she has a hub of infection inside her body that won’t go away or just a very bad viral infection after a previous viral infection or both or something else.
Her bloods levels are declining. They need to be careful.
When I arrived her yesterday she looked as though she was going into rigour again. It was freezing outside and snowing. I parked up (feeling lucky that I got a space immediately) and just jumped out scooped her up and ran. I held her tightly against my body and firmly around her head and neck. I ran. I was exhausted and couldn’t have anything happen right there at the entrance.
As I was going towards the ward I thought to myself ‘get a grip do we have to react like this and suddenly realised yes we do. This is how we have been told to respond and her temperature was already 39.2. I had to remind myself that we aren’t normal. She isn’t normal and we must rush. As soon as I got into the ward this time they were on things immediately. My nurse was even shouting st the doctor to hurry up and prescribe.
She’s been unsettled and irritable. I sit in the cot with her and cuddle or read books. She tries to sit on me. She does everything she can to keep me pinned down. She’s down. She was happy when her daddy turned up. They are very naughty together. Always up to mischief these two. I now realise how straight my four year old is.
It horrible being stuck here. Today we watched the snow and I took her for a brief ten minute walk outside in the sun to watch the snow falling. I don’t know if she’ll be here to see it next year. She been spiking temperatures again so things aren’t good. They are concerned here. Tomorrow’s bloods should bring some more news. We should have been starting chemo this week. It will have to be delayed.
I miss JJ. She was cute today on FaceTime. Big sister was dancing. She was sent home early from school due to the snow. She made snow angels and played on a new sledge.
Booboo has been given her own marked up packet of saline solution to play with and they have nick named her Dr Daya.
Her face is swollen. Her temperature keeps peaking. Her tummy hurts. She feels to weak to stand and walk. I get her to stand and play in her cot for a few minutes at a time.
Last night I had 3 hours sleep broken across the night. I have no idea how I got through this day.
I’ll have to cut this short as sleep is now a possibility for a few hours hopefully. It’s going to be another stormy night.
It’s tough living at the hospital. You can’t leave. She’s not old enough to interact and play stimulating games. We read books, do some art, cuddle and walk around the room.
It’s hard being here day after day – living here but struggling as you are enclosed and at the mercy of the infections.
She looks weak. I feel tired.