So now it is June and still Daisy has not had her ileostomy surgery...we did have a near miss last Wednesday when I received a call while out shopping to say that a theatre slot had been found and her surgeon, Mr Curry, had freed up some time for Friday to perform the surgery - however there was one crucial link missing, a high dependency bed for Daisy...One look at her complicated medical history and the surgical ward decided not to take her and there was no room at the inn on Rainforest, the only ward she can feasibly go to. So we are back to square one, waiting, waiting and more waiting. Lots of liaising is going on between administrators and ward sisters but everyone who knows Daisy knows she does not do things according to plan things are more complicated that another average child, add into that a very busy surgeon and we are now looking at sometime towards the end of July I was told today. Bang goes our summer, but I guess it means that hopefully (fingers and toes crossed) Daisy will be stable enough to go back to school in September.
We continue in the meantime to live our lives on a knife edge, unable to plan, or enjoy any plans we do dare to make in case they get changed. This is a busy time of the year for us, both Theo and Xanthe have parts in school plays, there are various end of school parties and celebrations for Xanthe, school uniform to be bought for new schools, sports days, Jules' first holy communion....and the big event for Xanthe and I, our plan to go to Glastonbury. My hope is that if we get another short notice call for the surgery like last week it will be at least two weeks before Glastonbury with the hope that by then Daisy will be stable enough for me to go away for a couple of nights while Andy stays with her, otherwise I hope the date comes as soon as we get back from Glastonbury hopefully meaning that by the time of the school play performances and end of year school shennanigans Daisy will have transferred back to the local hospital...but then who knows? We continue as always to try and make plans, in fact we make things up was we go along and seize the moment . Now that we are getting more sunny days I relish those special times when we can have a barbeque or go out for a few hours - we all savour them as moments to remember when we are back in a hospital room, staring at the walls. I think over the past couple of years Andy and I have definitely mellowed, we used to resent the constant change of plan and the unpredictable nature of our life with Daisy, now we have learned that the only certain thing is the unpredictable element of our life. We always have a contingency plan, we have become experts at juggling things and rearranging at the last minute, all mainly so that the rest of the children have a chance of some fun, the ones that suffer are us, the parents, but even then Andy and I have found that we have to savour the small stuff and focus on what we have, not what we don't have. We are both avid facebookers and use this to keep in touch with family and friends and eachother, we find humour in the blackest moments and we constantly try to make sure we have some time together whenever possible. This time last year Andy had been made newly redundant, the future was uncertain and Daisy was still long term in hospital. There were some hairy points in the year with work and finances but now at last it is all coming home to roost, self employment suits our life well, Andy can be more flexible with his hours which means he can be around more for the children when Daisy is taken into hospital, and this has lead to lesss stress all around.
We also have a great new carer for Daisy who comes to help after school some of the week, while she cannot do any of the medical stuff it is great having another pair of hands around and she can also help with the older children. We are in a better position than we were this time last year, not in terms of Daisy's health, but in terms of the support we have put in place to help us cope with challenges. So now to Daisy's health....it's been three weeks since she was discharged from hospital following her last drama, and now we are back in again, this time for a two week intensive rehabilitation stay under the rheumatology team at GOS. This is a different sort of stay and, if hospital ever can be, quite enjoyable. Everything is focussed on building up Daisy's wasted muscles and helping her cope with her hypermobility which, while a feature of Costello Syndrome, is very extreme in Daisy's case (well no suprises there). It is very intense for her and as we are staying in the Patient Hotel and not a ward it is intense for me staying with her as there is no nursing help at all, however already we are seeing the benefits and she is becoming stronger and more confident on her feet. Even though the ileostomy surgery will set her back she will have a good foundation for her recovery and her muscles will remember what they are supposed to do (I hope).
In the three weeks between stays we have made some progress with the management of Daisy's pain. This is still the biggest issue in her and our lives. Every single night she wakes with pain in her tummy and every single night we have to give her a maximum dose of calpol. It is ridiculous that she went from IV ketamine infusions, boluses, IV Paracetamol and Oramorph while in hospital to calpol via a non-working gut....however we have had a bit of a breakthrough, thanks once again to our wonderful hospice, Chase. Chase have employed a Palliative Care consultant as a shared role with the Royal Marsden Hospital, I met with her last week to discuss Daisy and her pain management - in fact the more palatable title for palliative care with children is symptom managment, which is exactly what we need. She has put together a pain management plan for Daisy for when she is at home, at the local hospital and at GOS. In the next week Daisy will start on a drug called Gabapentin, while it is used for lots of different purposes one of the side effects is to help manage neuropathic pain, which is the pain Daisy experiences from the incorrectly functioning nerves in her gut. This in turn may help her sleep better which may help her cope better with the pain. As I posted on my facebook page, you shouldn't be happy about meeting with a doctor who cannot cure your child, but I was over the moon, at last someone who understood the issue and impact of Daisys pain and managing it. Even if the Gabapentin doesn't work there are a whole other range of drugs we can try so I feel that we are no longer limited and alone. Ultimately we hope the ileostomy will help but taking the non-functioning colon out of operation but no-one really knows if this will work until we try. So in the meantime we will continue to muddle along, waiting for the surgery date, hoping it doesn't have too big an impact on family plans and keeping everything crossed the surgery goes well and with the desired effect. Maybe by the time of my next update we will have that elusive date - here's hoping!
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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