This post was originally posted on my AUDHD Not Broken Facebook page on 3rd March 2023:
It’s Friday today. I guess we call this day 3. I have slept so I feel a bit better.
Yesterday was a blur (Thursday – Day 2)
I’m the early hours of Thursday morning they told us that a pupil had blown (or was not responding) so they wanted us to see her before she went. Her dad said he couldn’t. I went in and held her hand. They said they expected her to get worse on the way to the scan. They were preparing us for the worst. It took a very long time for them to make sure all the wires and things were sorted so they could transport her.
After she went I went back in the family room. Her dad went and lay down in the lower bunk and after a while I lay down with him and he we cuddled while talking about her. We were talking as if she had already gone. I felt like that was it. She was gone or would be gone soon. Not that we accepted it but we were talking like it had already happened. Trying to prepare ourselves I suppose. We talked about how difficult it has been and about how we’d give anything to have her being rude or surly to us again.
Then later we met with a consultant who showed us the scans and he seemed a little more positive although don’t think anyone is suggesting she will make a full recovery. It’s very hard to know what is going to happen when one minute they are seeming to try to prepare us for the worst and another minute they are telling us of improvements.
I finally crashed at around 5am. I slept for a couple of hours.
Then later still (time is all fuzzy for me) we met with another doctor who more or less prepared us for the worst case scenario that she might not last the day out. The main issue is the brain swelling but some of the medical stuff has gone over my head. She’s very very unwell.
The rest of the day was a flurry of text messages, telling people, arranging things (like care of my dog and cat), people to bring things we need etc.
Everyone has been amazing. My sister came down and brought lots of food and drinks and supplies. She stayed most of the day and only left towards the end of the evening. She also sort of took over sorting out things that needed to be sorted out. Like telling my parents what had happened. She asked them not to bombard me with questions – a request which they ignored and did anyway.
My daughter’s condition has been fairly stable since the pupil issue. Still critical but stable and there have been some improvements in some areas: her blood pressure was high but has been coming down and her temperature was also high and has been coming down. We just have to take it hour by hour and hope that things remain stable and if we can hope for tiny improvements….
I had a bit of a mental break yesterday evening. Around 5pm I tried to lie down to get some rest. I took a blanket that my ex had brought from my house (because I need something thick to sleep under) but as soon as I lay down something bit me. So I was convinced I had brought fleas from my cat who is a little overdue his flea treatment (and I was due to sort it out this week) into the hospital and I completely freaked out and thankfully my sister helped calm me down. And then I realised that I hadn’t remembered to bring my anxiety medication that I normally take and I hadn’t had it Wednesday night as we had been rushed to the hospital so quickly and I was starting to feel really anxious and I knew I needed to be able to rest to deal with whatever is coming, so my sister asked the staff in the PICU about emergency medication and they advised me to go to A&E to talk to them which we did.
My sister came with me. She was amazing as were the staff. While we were waiting there was a man being very abusive and rude to the staff – in particular to a porter. The situation escalated and then the porter (being defensive) looked at me and asked me if it was okay for the man to call him a rude word (“prick” I think it was) and I just burst into tears. I just couldn’t hold it in anymore. I think the confrontation was too much. I think at that point they called me to be looked at and they gave me some larazopam to calm me and told me they would put my prescription for my usual medication through to the pharmacy. On our way out we spoke to the porter and told him we were sorry about how that man spoke to him!
I felt much calmer after that. Slightly spaced out even. I can’t remember timings but I then went to lie down and slept until around 7am this morning.
Been to see her this morning and she is still fairly stable.
I’ve just had breakfast and am now in the courtyard with a costa and having a vape.
