We came home from hospital last night. Ultimately it was our decision, but Dr Campbell suggested we needed to spend time on our own – as a family – and come to terms with what has happened. We knew he was right but the thought was scary to both of us. Its amazing how quickly hospital becomes your life. It had only be a week but we knew the nurses and doctors, we knew who we liked, who we laughed with, we knew the routine of hospital life and were happy with it. Most importantly, nobody there looked at us like they felt sorry for us or struggled to find words to say. I couldn’t be dealing with that shit. I liked our bubble. However, Freddie had been seizure clear for 48 hours and it was time. We couldn’t stay there forever. We had to get on with our new life.
Once we made the decision we wanted to get home. It doesn’t work like that though, you need your discharge letter, medicines, Freddie needed his cannula removed, his upcoming appointments for the following week needed to be confirmed ‘You know the community nurse will need to come and see Freddie on Monday and he’s having tests after seeing Dr Manounou Tuesday…’ Plus the shift was just changing over from day to night which meant all that would take longer than usual. I think we actually walked into our house at 10pm. All three of us were the most exhausted we’d ever been.
Coming home was strange, everything was the same, it looked and smelt the same, exactly the same as our previous life. It wasn’t though because everything has changed. I don’t really remember getting home, I fell asleep on our bed with Freddie whilst James got straight to assembling the new bed for Freddie’s room. We decided to take it in turns to sleep in with him until we felt comfortable/settled into our new life.
I remember James waking me at midnight because it was time for Freddie’s medication (he has to have a small bottle to line his tummy first) I remember we argued, I don’t remember what about only that I was so bloody tired I couldn’t think straight. I was so confused about what was happening. In the end James told me to go to bed then he woke me again at 5:30 for the next lot of steroids. That time I was more with it. Still exhausted, but more useful and less argumentative. I guess we argued because we were both scared, anxious and tired.
For 14 days Freddie needs his full dose of steroids every 6 hours then he can be weaned off of them and then we wait, and wait. A relapse could still happen. It could happen as soon as we start weaning him off, it could happen a week after, a month… Anytime.
It’s ok though, we can do this!!
