Compared to the past three years, this has been the best summer yet for our family, however as always it was marked by hospital stays and emergency dashes to A&E. In between those times we did manage to fit in some family fun and even had a whole two weeks when we were not in hospital with Daisy, managing instead to have a wonderful family holiday in Devon, thanks to the wonderful charity Torbay Holiday Helper's Network.
But the reality is that no parent should be excited about the fact that they have achieved a two week gap between their child's hospital stays, it is no way to live wondering if the next temperature spike is the one that does not respond to IV paracetamol or is the start of a septic episode. At times it feels like our phone is on speed dial to the London Ambulance Service. Each time Daisy has a hospital admission or a bad night it just confirmed to us that we are right in making the decision in going ahead with the colectomy surgery, this is no way to live, her pain management regimen has been going up and up, and it is not an option to continue like this The other thing that has become evident is the deterioration in Daisy's bladder function making the Mitrofanoff surgery a complete no brainer.
So, after a wonderful summer where we really did manage to fit in quality family time between hospital stays, Daisy will return to Great Ormond Street Hospital tomorrow and will go to theatre on Friday morning for surgery to remove most of her large bowel and to from a Mitrofanoff from her bladder through which we will be able to catheterise her. She will spend some time in intensive care where she will have an epidural for the pain and after that no-one knows, it truly will be one day at a time. We know that by taking away most of the large bowel we are removing a toxic source which is contributing to her infections and pain (her colon is inflammed and leaks bugs into the bloodstream which are increasinly becoming resistant to the antibiotics we use to treat Daisy). We also know that removing a permanent catheter and forming a new channel will hopefully reduce her risk of infection and make her more comfortable. Our biggest wish for this surgery is that it allows her more time at home with us and at her beloved school with her friends. We hope it will help reduce some of her pain but it will at least help her symptom care team better target her pain relief. We hope it will improve her quality of life and give us all more time together. But no-one knows, as always with Daisy we are in completely uncharted territory, and as everyone who knows her says, she writes her own book. We know that her recovery will not be straightforward and we know that this will be another lengthy hospital stay - knowing these things in advance have helped us prepare in some practical ways, but in terms of emotional preparation, there is nothing we can do. Andy likened our lives at the moment as like being in a car knowing it is going to crash but not knowing how bad the crash will be - we a bracing ourselves, and hoping......
So this is it, as every milestone and procedure gets bigger and bigger this is the biggest surgery in Daisy's life, we are in her hands, she has the constitution of an Ox and a lust for life and all we can do is support her in this. Whatever works for you, prayer, positive thoughts, crossing fingers, please do this for Daisy on Friday morning GMT as we hand her over to the best team of surgeons, & anaesthetists you could wish for....
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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