I’ve had a few technical difficulties over the last few days. I usually write my blog on my iPhone at night in the hospital when Anna is asleep. The new cubicle we are in has no outside windows (we can see into the ward and windows across the other side) but it means there is absolutely no signal even for phone calls, let alone Internet. Also, last night when I had finally managed to get my post written and uploaded photos, I pressed the wrong button and deleted the whole lot. It was late and I was tired (had busy but fantastic day training on time management with Anna Davis (Achieve Balance)). Anyway, I hadn’t the energy to redo the whole lot. So here is version 2!
The ward never sleeps. Lights are dimmed but activity continues through the night. Anna’s obs (blood pressure and temp) are taken every few hours. Sometimes she sleeps through it, sometimes she doesn’t. She is, at times, on an overnight feed or water drip which the nurses set up and take down in the night – we will have to do it ourselves when we get home. And of course,she needs the toilet in the night, especially when on any kind of drip. When Anna wakes in the night, then so do I.
Medicine rounds are at 8, 2 , 6 and 8. Depending on what day it is and what additional drugs are required (eg painkillers) she might have between 1 and 5 to take at any of those times. The nurses measure and fill the syringes and then Peter or I put them in through her ng tube. We will do the whole process at home.
‘Mummy, I’m hungry’ is something Anna says a lot. A side effect of steroids is a feeling of being really hunger but it seems to be a hunger that is difficult to satisfy. So, at any time of night or day, she might ask for olives, cucumber, rice crispies, cheese dip, nachos or pasta and butter. These seem to be her favourites. The night time hunger has abated since stopping the steroids – I’m very glad as making pasta at 3am wasn’t much fun!
On weekdays, Anna has sessions with Jenna, her physiotherapist and Natalie or Charlotte, her occupational therapists. Her interaction depends on how she is. On a good day she will be on her feet (supported) for a while, sitting at her table or playing with them on her mat whereas when she is weak and feeling rubbish she will struggle to even be sitting upright in her bed ( this is how she was most of last week). We also have exercises to do with her during the day.
The play therapists are on the ward Mon – Fri and organise activities, mainly arts and crafts, which Anna enjoys, again depending on how she is feeling. She loved making this dragon on Friday to celebrate the Chinese new year.
Other times we play with some of the lovely gifts Anna gets.
The doctors come round every day to discuss Anna’s progress. We also see the dietician (Leisa), out reach nurse (Bernadine), social worker (Elaine) and kindred (parent support group) worker (Veronica) on a frequent basis.
At times, it can get very busy in this little cubicle!
Anna’s temp has now been down for 48 hours so we will have a discussion with the doctors about going home. I hope it is very, very soon.