Today is day three post surgery and Daisy is still in a lot of pain. Her morphine and ketamine have been pushed up as last night her epidural came out and this was taking the edge of her pain.
Her bowel has still completely shut down but her mitrofanoff is working well. There is nothing going on that we did not expect or anticipate, from her need to be transfused soon to her low grade fever (as a result of bacteria being release from the colon when it was removed). So while the first big and dramatic milestone, the surgery, is over with no major dramas or suprises, the challenge will now be over the next days and weeks as hopefully Daisy's gastrointestinal system starts to work and we are able to assess the level of chronic pain she has that will need managing from an ongoing basis.
The challenge for me is to turn the gears down and move out of sprint rhythm and onto a marathon pace. It's easy to want to move forward quickly and set yourself up for disappointment, especially after the adrenaline fuelled last few days but the reality, as any parent of a child with complex gastro needs will tell you, it's two steps forward and one step back. While appearing pessimistic to some doctors who don't know Daisy and quite what she is capable of, I prefer to describe myself as realistic. I anticpate that things will go wrong, multiple spanners will be thrown into the works on our journey to get Daisy back home, and if things happen sooner than I anticipated then that's a bonus!
We are on a different ward to our usual Rainforest and under the Surgery and Urology teams, I'm letting them get to know me so that I don't come across as a pushy mother. It's so difficult when your child is so incredibly complex and your main role is to know all about her to reign it in a bit while the professionals do their job! However I (and of course Andy who is a complete hands on dad too!) am first and foremost Daisy's advocate, making sure that she gets what she needs. Daisy's palliative consultant has just been to visit her and it needed her to point out to me that most children don't have a tummy that looks like Daisy so my role has to be to ensure that everyone involved in her care knows what to do - after all she currently has five different bags attached, all with separate labels! Plus a huge scar from her chest to her pubic bone, plus a hickman line and a gastrostomy button and jejenostomy button - I'm so used to all of this I forget that to the unitiated this is all be bit daunting, particularly when you factor in her complex pain management regimen and the fact that she mainly signs to communicate.
Today Andy and I celebrate our 19th wedding anniversary, we really, really did not know what life would have in store for us all those years ago, surviving redundancy, career change, bereavement and the diagnosis of a child with Asperger syndrome would be enough before throwing in the white knuckle ride we embarked on when I was taken into hospital in premature labour in November 2004, but we both believe that we are the living example of what doesn't kill you makes you stronger. Our marriage is stronger today than ever, helped by a healthy sense of humour and stamina to keep going on this ultra marathon that life is throwing at us.
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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