Here's Daisy wearing all the medals from the races I have run in her name this year. You can read my race reports here. My challenge is not over however as next year I am running in the London Marathon as part of the ShootingStar-Chase team (gulp!).
It was lovely to get home and wash the mud off from the run and spend time with Andy and the children. The plan for the week had been to get everything prepared for Daisy's admission to Great Ormond Street on the Thursday evening. We are having adaptations done to the house in the new year thanks to a disabled facilities grant from our council and I wanted to take delivery of a new bed which would fit better in Daisy's new room and organise all of her medical supplies as well as do the usual mum stuff of sorting out endless paperwork, pay bills, catch up with the laundry and write the parent evidence form for Theo's educational statement assessment!
However the best laid plans and all that......Daisy had the night from hell on Sunday night. Thank goodness we had one of our night nurses working that night otherwise I think she would have probably ended up in A&E a lot earlier. As it was, after the children had gone to school on Monday morning and Andy had gone to work (and I had rapidly rescheduled appointments that I had made for Xanthe and Jules), I took Daisy to A&E with a prolapsed stoma and in extreme pain despite hefty doses of opiates, ketamine and midazolam (plus all her usual stuff!). So Monday afternoon I found myself somewhat unexpectedly being transferred from our local hospital to the surgical ward in Great Ormond Street facing the prospect of some emergency surgery if her stoma continued to be shut down and prolapsed....within 24 hours I had gone from running through muddy puddles in the Surrey Hills to making frantic calls to friends to collect children from school and working out how to get Daisy's bags of TPN to the hospital as I hadn't anticipated a bed being available at GOS and thought we would be at our local for a few days...
Overnight the stoma started working again and she was taken off the emergency list as everyone agreed it was safer for Daisy to do everything as one planned surgery than two surgeries in one week. As it was we realised that Daisy needed to be in hospital, she has been becoming increasingly lethargic and her pain levels have become more and more difficult to manage. Being admitted a few days earlier than anticipated also gave me a chance to prepare Daisy for the impending surgery and help her adjust at her pace to the change of routine. I have made a "Daisy goes to hospital" book which articulates how I think she may be feeling and tells the story of coming into hospital, what is going to happen and how she will feel when it is all over. Daisy cried the first couple of times we read the book together as she realised what was going to be taking place but increasingly she has been looking at it and I really think it has helped her understand what is happening to her and hopefully manage her feelings around it.
So after signing a consent form which read like a shopping list of procedures that needed to happen we took Daisy to theatre on Friday afternoon and attempted to while away the hours by pretending to look at things in shops and staring at words in books without reading them...
I can never fail to be moved by the expertise and care shown to our daughter when she is in crisis - the surgical team, anaesthetists and nurse specialists who looked after her while she was in theatre are just incredible - a huge team of people for one little girl. No judging on the fact that she is life limited or has a multitude of disabilities, all just focused on helping improve Daisy's quality of life. Andy and are are eternally grateful to our wonderful National Health Service for giving us our daughter and never giving up on her. Friday's surgery was huge - she was opened up from sternum to pubic bone and adhesions were dealt with, two stomas were revised, her remaining piece of colon was removed, various bits were stitched and trimmed and the area cauterized. Drains were put in, an epidural was in place and she was returned to us with a pump running continuous morphine and ketamine.
Just over 24 hours post surgery, Daisy's not out of the woods yet. She remains very uncomfortable and because she was intubated for so long her airway is swollen and her chest is rattling. She is going to have a blood transfusion tomorrow which will hopefully make her look less pale too! Now the work begins, starting the recovery post surgery with the hope that she will be a little bit more pain free at home and that we can also get a good plan for managing her fluid balance which is becoming more and more of an issue.
In the meantime I an totally reliant on the internet so that I can do some Christmas shopping and even in my extreme multitasking way order food to be delivered to the family at home in my absence. My running continues and while Andy and the children visited this afternoon I sneaked off for a quick 8 miler around the streets of London. Returning mentally refreshed and full of endorphins.
My surreal life, sometimes I can't quite believe how it all got so complicated!