As I live blogged from the hospital yesterday, this month, for the first time, one of the Neuro Specialist Nurses decided I could attempt to have the full 80g of Privigen I would usually have over 2 days, over just one day instead.
I was excited but terrified at the prospect, as having experienced some of the negative side effects of treatment after my IVIG in November, I was not relishing the idea of spending 48 hours lying in the dark cuddling a vomit bowl. Thankfully, I tolerated the increased infusion rate really well. (And when I say increased infusion rate, I really mean it! Starting at 100mls/hr instead of 21mls/hr and finishing up at 300mls/hr rather than 150mls/hr!)
So rather than spending all day yesterday, and all day today at Salford Royal, hooked up to an IV, I was done by 3pm yesterday and didn’t need to go back at all today.
It was so strange coming home without my cannula, and not needing to get up and go anywhere first thing this morning. Strange but brilliant.
I had a bit of a lie-in, not getting out of bed until 10am! Then we had a cooked breakfast, which is a rare treat, playtime with the rabbits, and then this afternoon I got to break in my new shoes when we had a leisurely (leisurely being the operative word there) stroll to the park.
The boys took their bikes, with mixed success. Toby is getting pretty fast and daring on his, whereas Rudy is still a bit unsure, and after taking a tumble on the bike path he was all the more anxious for the rest of the trip, periodically screaming, and yelling “IT WOBBLING!”
By the time we made it to the playground the sun had really come out, and some lads playing football on the courts had some reggae playing and as I sat, with my ginormous hips wedged into a swing, which creaked rather ominously under my weight, and watched Chris and the boys running, spinning, climbing and swinging I felt so thankful for this unexpected free day.
The really great news is that in theory I will now be able to have my IVIG over just one day every time, so there will be many more ‘Free Days’ in the future, although since I know about them already I don’t think it will be quite the same as the feeling I had today…of relishing a day with my family that I didn’t know I would have.