Two weeks post surgery and this amazing girl continues to defy the odds and exceed expectations. No-one who knows Daisy well would have believed how strong and well she would look two weeks in. She is still on intravenous morphine, paracetamol and antispasmodics, but her ketamine is now going into her jejenal tube along with all her other meds, including the latest additions to her pain cockatil - oxybutinin and diazepam...
She is also nearly back up to her old enteral feeding regimen, although her TPN is still running over 24 hours . She is clearly over the acute, post surgical phase and now reality bites as we work, at Daisy's pace , to get her back to a regimen of nutrition and pain management where she is comfortable and we can manage at home. Our aim is to get her home and keep her there for as long as possible, that was why we agreed to the surgery, in the hope that it would reduce the infections, but while the medics are all very pleased at how well things have gone, Andy and I are more guarded, relieved that she got through the surgery in one piece but biding our time before we say that the surgery achieve the desired outcome.....I won't be able to say that for certain until a good few months down the line when Daisy has been home and we have a semblance of normality in our family life.
And soto thoughts of going home....we had always prepared ourselves for another long stay, preferring to put the hours in now in the hope that this will pay dividends. The next milestone in Daisy's recovery will be to remove the drains from her bladder and start to train it in preparation for catheterisation via her new Mitrofanoff stoma. We don't anticipate this will be a quick process, Daisy has been experiencing a lot of pain from her bladder and we can't imagine that she is going to be too tolerant of a plastic catheter being shoved into a newly formed bladder stoma that she currently associates with pain. However we know that slowly slowly things will get better and we will perfect our catheterisation skills in the same way that we perfected our Hickman Line & TPN skills and Ileostomy skills and all the other medical procedures we have had to learn on the way, and the mitrofanoff and bladder emptying will become another part of our lives.
Standing back from all of this we can start to see how easy it is to become swept up in the world of caring for Daisy's medical needs, we have become competent in so many areas, I wonder is this a good thing? What if something was to happen to us, would someone else know what to do??? One thing I have put in place is a "Daisy Bible" a huge file all about Daisy with her care plans, key contacts, letters, information on her communication needs, even pictures of her enjoying life at home - everything anyone would need to understand how to look after her, the nurses have told me that it is invaluable in helping them get to know her and to deal with her needs without always having to ask me. Increasingly Andy and I have been aware that we need to make sure more and more people know and understand Daisy's care needs so that we get the support we need to parent her and also so that people who look after Daisy realise that she has a say in how she wants things done and what she wants in life. Daisy is nearly 7 years old, we need to make sure that everyone understands that her opinion matters.
We have been very fortunate during this hospital stay in that there was a huge amount of planning that went on beforehand and teams involved in Daisy's care are co-ordinating and communicating better than they ever have been. We actually had a multi-disciplinary meeting yesterday to discuss Daisy and next steps now she has recovered from the acute surgical phase. I am so relieved that the team have clearly got a good understanding of Daisy's holisitic care needs, and specifically that to make her best recovery she needs to be allowed to be a little girl. They have suggested that instead of condemning both Daisy and as a result the whole family to another extended stay where we tweak TPN volumes and drug regimens Daisy goes to a setting which can manage both her medical and social needs better, this sort of setting would be somewhere like our hospice or a rehabilitation centre like the Children's Trust at Tadworth. Both options would be fantastic, they would allow Daisy to have fun while having one to one nursing care and an input from her GOS teams, the downside is that this would involve funding at Primary Care Trust (PCT) level
From our point of view how wonderful would it be for Daisy to be able to be out of hospital and transition to home safely with appropriate medical care so that when she did come home she was stable and we were able to confidently support her medical needs - we know that Daisy would want this, however great this plan sounds it comes at a cost, someone (ie the PCT) would have to pay. If they refuse to allocate the funding for this then Daisy will have to remain in hospital as we just do not have the 24 hour nursing care at home which would enable us to manage her medical needs until she is stable and the price will be Daisy missing out on precious childhood days, her parents not seeing eachother while one stays at the hospital and the other struggles to manage a career to support us and three siblings needs constantly juggled according the to day of the week and which parent can manage to be at home. There is just no consistency in care strategies and budgets in this country and while our community nurse will take Daisy's case to a panel of managers next week to consider together with letters of evidence from her Medical Team at GOSH it will come down to whether they wish to allocate funding to support Daisy's needs, some PCTs will, some wont - it's a postcode lottery and comes down to cash. So Daisy will either strike lucky and receive funding to get out of hospital and into a more holistic environment or the decision will be made that the PCT cannot afford it and, as there is no where else suitable for her to go until she is stable she will remain a guest of Great Ormond Street.
Please keep your fingers crossed that the decision goes our way and Daisy gets to do what she wants for a change.
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!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)