We were admitted to Pinckney Ward in the early hours of Thursday morning however due to a bomb scare (thank you to whoever put a lit cigarette where it shouldn’t have been) we were kept in A&E much longer than necessary and were only brought up to our room at 5 am. In the meantime once Massimo was settled I came home for a quick shower, picked up a few bits and updated the site.
The hospital organised an ambulance to take us to Great Ormond Street for his cocktail of chemo which he should have had on Monday. Massimo was on a dribble of oxygen so we had to go by ambulance. Thursday was also the first day that our day respite care from the Outreach Team. Outreach will provide us with one of two nurses (Sheila and Annette) twice a week for 5 hours at a time. Sheila kindly said she would come to GOS with me to help out and to meet both Massimo and me. So Sheila, Massimo and I left for Great Ormond Street at about 11.30. Unfortunately someone got the wrong message and GOS thought we weren’t coming so Massimo’s chemo was not ordered. By the time we got there (12.30 ish) we had to wait until 5.30 for the chemo, then another hour or so for the ambulance back!
For some reason, although he was absolutely shattered Massimo hardly slept ALL day!
Sheila very, very kindly went above and beyond the call of duty by staying with us all the way until we got back to the ward and then insisted on giving Massimo a quick wash and a feed! She didn’t leave till about 8 pm. At the same time Massimo’s nurse came in and asked if I was staying the night or if I wanted an extra nurse to come in and look after Massimo. Well, I was so shattered I took the latter option and came home for a good kip.
This morning was spent organising and in my absence Massimo was moved from Pinckney Ward to Freddy Hewitt Ward apparently because Freddy had better staffing. Pinckney had said they were going to get us another extra nurse for tonight, Freddy however would not. So I am off back to the hospital for a bad night’s sleep. Massimo’s oxygen requirement has reduced and his bottom is getting better slowly but the chemo does make it worse too, so we are fighting a bigger problem than before. I don’t know how long we will be staying in but I sincerely hope we are home by Monday.