Postcode Lottery

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.

It's a marathon, not a sprint

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.

...and onto the next phase

well, Daisy now officially has only 5cm of large bowel left, a Mitrofanoff channel formed from her appendix for catheterisation and as a bonus a repaired parastomal hernia and a new chapter in her life has begun.

When we met with the surgeons the day before the operation the enormity of what we were consenting for on her behalf hit us, this was huge surgery, with all sorts of risks and possibilities for complications but having spent six hours in theatre yesterday the consensus
among all the team involved is that it could not have gone better. There were so many concerns about abdominal adhesions, viability of her appendix to be used for the Mitrofanoff, bleeding - however everything went according to plan and Daisy is now back on the ward and the long road to recovery can begin.

Again the terrible night she experienced the night before the operation confirmed to us why the surgery needed to go ahead. We have not been able to put any feed into her jejenostomy for many weeks now as she has been refluxing so badly and the night before her operation she vomited constantly and was pouring bile out of her gastrostomy. We hope that this deterioration is not permanent but only time will tell.

In the meantime we are now focused on Daisy's recovery. Not surprisingly her bowel did not like being handled and has shut down, it coUld take a while before it starts to work again. She has an epidural for pain relief plus a constant infusion of double strength ketamine and morphine, we just need to keep her comfortable and let her recover from the anaesthetic , as always our mantra will be " one day at a time"

A Summer, of sorts

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....