I was transferred to Birmingham ITU on Saturday, October 17, and they attempted later that day to bring me out of sedation but were unable to. There was talk of me needing a tracheotomy if they tried a number of times unsuccessfully but luckily the next time they tried on the Monday I woke up. It was a horrendously confusing time for me because I had no idea where I was or what had happened, they kept telling me I was in Birmingham but the last memory at that point was of going into A&E in Telford in mid September. Also the cocktail of drugs they had me on, and the fact I’d been under sedation, meant I was experiencing what they call ‘ITU delirium’ – I honestly believed the nurses were trying to kill me and were selling my drugs to teenage boys smoking in the next room. I told people I could see massive blocks of ice walking around and that the doctors were on rocking horses. It sounds funny now but at the time it was awful being convinced you could see and hear things and no one else being able to, and not trusting the people who were looking after you.
I had to be put back on the ventilator the following day but luckily by the Wednesday I was able to come off it again and I was well enough to be weaned off the oxygen. The amount of treatments I had is ridiculous and I can’t remember them all! But they included five lots of plasma exchange (where they take the bad plasma out and replace it with ‘good’ plasma), I had antibodies put in me and I was also treated with so many medications including one which is apparently known as the medical form of Domestos! I asked one doctor if I had anything left inside me which was mine and he said apart from a few of my own red blood cells, pretty much all everything in my blood was someone else’s.
For the first few nights in ITU I didn’t sleep at all, I think part of it was all the meds including steroids but part of it was psychological – I truly thought if I went to sleep I’d never wake up again. They even tried giving me some medication through a drip to get me to sleep and that didn’t work. Dylan had put pictures of Alexandra up around the room so I just stared at them – I knew I wanted more than anything to get home to the both of them but at the same time I was so scared I wouldn’t make it there.
Although things were on the up after a few days in Birmingham, there were always going to be long-term effects after such a big ordeal. One was my right hand – my limbs had been affected by the clots too (in fact that was when the doctors started to think it was APS not lupus) and although they’d mostly returned back to normal I had lost the feeling in most of my hand and the fingertips and nails were blackened. It’s slowly returning but the doctors have no idea whether I’ll ever get full use of it again, meaning part of my recovery has been about learning to do things a little differently (it took me a few goes to master nappy changing!). There were also concerns about the long-term prognosis for my heart which was pumping at less than half the rate it should be. More on that in the next post.
Because of the amount of muscle mass I’d lost while I’d been under sedation I had daily physiotherapy to try and get some of my strength back – on the Thursday I managed to sit on the side of the bed with two people’s help and the following day I was able to stand up for the first time. On the physio’s suggestion it was organised for Alex to come in on the Friday to see me. I cried so much when they told me it could happen and then spent the next 24 hours scared stiff something would happen to stop her being able to come.
Luckily it didn’t and I finally saw my baby girl again on the Friday, she had come in while I was on the respiratory ward in my local hospital but I had no memory of that so really it felt like the first time I’d seen her in a month. She’d changed so much, got so much bigger and started smiling. It was heaven to finally see her but at the same time so upsetting to know, however short a period of time in our lives, I’d missed out on that bonding time with her. From that day she came in with Dylan for most of the rest of the days I was in hospital, seeing the two of them was always the best thing about my day. Knowing some people don’t even get visitors, the fact my mom was there every morning into the afternoon, Dylan and Alex every afternoon into the evening and others in between too was amazing. My support network has been expansive and so fabulous (a special thank you here to Henrietta and Ben, Beccy and Manda for their support, to the NCT ladies for looking after Dylan and to everyone who babysat Alex so Dylan could come to the hospital when I wasn’t well enough for her to visit. You are all stars).
Join me next time when I get to move out of intensive care and on to a ward!
Harriet and Alexandra x