I had a good weekend and on Monday night Mummy got to take me home. I was so happy to be home and have cuddles with Ella and sleep in my own bed!
Being home was short lived though as on Thursday I was heading back to Rotherham for ECP but Mummy was hoping to be home by Friday lunchtime.
My ECP treatment went well on Thursday and I had good fun kicking toys in the cot and shouting which Tracey the nurse thought was funny! Then it was back to the Premier Inn with Mummy to watch Eastenders and have a cuddle before bed.
Overnight Mummy noticed I sounded a bit snotty and at 3am I had two aponeas (I stopped breathing) and Mummy had to call an ambulance and I went to Rotherham A&E and had oxygen. In the morning I went up to the Children’s Assessment Unit where Nick looked after me. Rachel from Photopheresis came up too but I was too poorly for ECP but she stayed and helped look after me. I started getting very tired so an anaesthetist decided to give me some help and I was put on a ventilator. So many people came to help me, and being up north they made sure Mummy had a cup of tea!
Rotherham doesn’t have an intensive care unit which is what I need and Birmingham Children’s didn’t have any beds free so the Embrace transport team have brought me to Sheffield Children’s Hospital which is where I am now. This is my 6th hospital so another set of doctors and nurses for Mummy and Daddy to meet!
I have had lots and lots of tests done but at the moment the doctors think I have developed bronchiolitis. I had pesky bronchiolitis last Christmas which made me poorly but because my immune system is very weak I can’t fight it now. I’m still on a ventilator and sedated but the doctors have weaned it down a little bit.
Hopefully I’ll get to Birmingham Children’s Hospital soon once a bed is free and then I have to get better and get home because Ella is waiting to put the Christmas tree up.
Lots of love