We were discharged two nights ago and two days ago we went to our other hospital to get our radioactive injection.
Instead of giving it on time the staff decided to go to lunch. Not good.
They were rude to the nurse with us when we went down on time for our appointment. Not good.
Delayed the injection. And delayed when the baby could feed and sleep. Not good.
Came home. Spent some time with the kids.
By spent I mean, had some quick cuddles, made a lunchbox for tomorrow, changed nappies, did the bedtime routine and unpacked and repacked the Hospital bag. Was supposed to have a shower. Sat down to sort out appointments for JJ for next few weeks and within an hour heard Booboo crying.
Rushed upstairs and we had a temperature. She was up even after the morphine she had an hour or so earlier.
So rushed to the hospital. Alone. I’m good at this. Bag was already packed. Next two hours were spent sorting out meds. Went to bed 1am and up by 5am. You can’t believe how much stuff you need for a baby in Hospital.
Then we were supposed to go to our specialist hospital again (yesterday) but had to tick lots of boxes as it’s a Hospital to Hospital transfer. Utter nonsense going on back and forth and wasting time. And then an irrational and irate phone call from a nurse to me which should have been for another Nurse; not good.
Anyway after lots of bs back and forth and boxes ticked and some shouting from the other side and poetic license from a Nurse on our side….and much time wasted…we headed off.
We were chilling. Had a fairly sensible ride down. Booboo slept which meant she wasn’t hungry.
Got to our hospital and ‘so sorry, so sorry for all the confusion this morning’. Whatever.
I think in all this nonsense they forget about the patient and the real human beings involved in the scenario. There’s sometimes a behaviour across the board to tick boxes instead of connecting with people.
They forget the cancer will kill her if nothing can be done about it. They forget the actual patient. They forget the parent.
So Booboo was nil by mouth from 645am. Went under at 2pm. I was there. I put her down. She was excellent. I kissed her forehead. She was amazing. I try not to think too much.
They strip her down. Give her medicines into her line and then they sedate her. Her little body is moved from my lap to the CT scanning table. They tell you to kiss her. Then they put the oxygen mask on her and tube her up. They put a gown on her and a layer of ‘hot air bag’ to keep her warm.
Meanwhile, I go off to sort out stuff but wonder round for a bit not knowing what to eat or drink or do. I headed to Waitrose nearby to by some snacks for Booboo.
This is us early this morning.
Waiting for people to sort things out. Missing our last chance for fluids on nil by mouth protocol.
In the midst of the draining nature of the day I have remained calm and stoic. I left 2-3 hours later than planned. Had to stop for a nappy change in the dark. Made my way back to the hospital via a quick drive by home and in and out again. I got to the hospital and realised I had forgotten the Potassium iodate pills to protect her from the side effects of the radioactive stuff. This was about 9pm at night. I had to rush to the car and home and come back before bedtime to ensure she took them in the right dose. My body aches.
This time after the scan she was very high and happy. It was a pleasure to watch her cheeky little face all high as kite. We were all very amused. Unlike the other kids who were crying and screaming the place down, which Booboo does too, this time she was a very pleasant and mild mannered drunk drifting on her happy drug-induced cloud.
I came back to the hospital without seeing Big Sis but I crept in to see JJ who was fast asleep.
At the hospital I ran though all the updates of bb’s medication with the nurse and gave some medications to B.B. I have to stay on top of all this and the times. I really am an Uber driver meets Nurse.
Rather amusingly this is her when she came round From her anaesthetic. She was happy. She is one funny kid. She loves the mask that puts her to sleep. She kept putting it on her face. Should I be worried? Haha
Back in our room, ordering Pizza again.
It’s been a long draining day. Let’s hope for good results because this is what it’s all about.