It's still about one day at a time

So, it's New Year's Eve and already the stream of texts and emails are coming through from friends and family over the world, full of good wishes for 2012, hope that things will you all know, I am always optimisitc, glass half full but also profoundly realistic.  Andy and I chatted about our hopes for 2012 earlier today and we both agreed that actually, our philosophy of one day at a time still holds true today, new year's eve, it's just a date, a number, our hope remains for stability, and time...whether it's tomorrow, next week, month or year.....

As it is, Daisy is in hospital.  Yesterday she woke up in severe pain and despite the overwhelming cocktail of drugs we have at our disposal at home we could not get ontop of it and more worryingly her breathing was becoming laboured when she did fall asleep.  So it was time to visit our local hospital, and such a relief to have some great registrars on duty who made our visit less stressful.  Daisy needed intranous morphine and fluid resuscitation and today is tired but better.  In fact we have brought her out on home leave in the hope that we can manage her pain at home but will return if it gets worse.  Hopefully if she can get through the night without an escalation in her pain management requirements then she can be discharged.  It is really worrying how bad her pain became yesterday and how quickly and we just hope that this is not the shape of things to come.  We are due to go to Great Ormond Street in a couple of days so maybe they will have an idea why she is continuing to get such bad pain or at least we can tweak her pain management plan to avoid it getting to the point where she needs to be in hospital.

As it is New Year's Eve I have been reflecting on 2011 and what it has thrown at us.  It has been the year of surgery and bladder issues for Daisy and facing facts and some pretty tough conversations for us, her parents.  Daisy now ends the year with an ileostomy stoma which continues to have high output and episodes where is completely shuts down (goes into pseudo-obstruction), she has a surgically formed jejenostomy through which she receives her medication, her gastrostomy is now permanently on free drainage with a bag attached as her stomach does not empty and her reflux and reverse motility is worsening, she has a mitrofanoff stoma and we are now able to change her catheters daily at home through this, and of course she has her hickman line, a central line which goes into a main vein into her heart through which she receives her nutrition (TPN).   She is on permanent antibiotics and anti-fungal medications because of the bugs which are colonised in her body, these treatments keep the bugs dampened down to a level where they do not overwhelm her causing sepsis, but we live with this fear permanently, especially as she becomes resistant to antiobitics as a result of long term usage.  And of course there is the cocktail of pain meds she is on - enough to fell an elephant but sometimes only enough to take the edge off the pain for Daisy.  From a medical point of view things have deteriorated hugely - her TPN requirements are going up not down and now we are faced with the situation where there is no more surgery or treatment that is going to make things better, just symptom management and our hope for time and stability.

But Daisy's cognitive development is outstanding, she signs constantly and when she is well and confident this is backed up with lots of talking.  She is completely in love with her siblings and if you mention any of their names she signs brother or sister and then signs "love".  She is also obsessed with telling people if they are boys or girls having worked on this in school which is always amusing when strangers, such as the man who came to read the electricity meters, come to the house and they are greeted with shouts of "boy!" and the associated sign!

I have to keep focussing on the positives - she is still with us, this has been a year when we have said goodbye to others close to our family, she is still fighting, our determination to keep her at home is unwavering.  We just cannot dwell on what 2012 will bring, we  could not have predicted what 2011 brought our family and I just have to be grateful that we have ended the year as we started it, as a family of six - we have more battlescars, we have increase our medical knowledge, we have come to embrace the rollercoaster of Asperger syndrome, we have ridden the storms, plummetted the depths of our emotions and yet we still seem to be standing. The only thing I ask for next year is time....more time together, time away from hospital, time for me, time to be a couple, time to be a family.  But I am aware that we have already been so blessed, with seven years with Daisy, and thinking of this is what reminds me that the cup will always be half full, against all the odds, she has given us seven years of joy and love....I think I will leave it at that and continue to take things one day at a time.....

Thank you to all my wonderful friends who continue to give me such strength and support, so many of you I have never met, some of you have only come into my life since having Daisy, but to know that all over the world there are people who are thinking of us and rooting for us really keeps me going....I feel the love, thank you.

Happy Days!

Despite everything going on Daisy is determined to live life to the full - here is a selection of pictures of Daisy having fun on her birthday and in the run up to Christmas.  We are off to our hospice ShootingStarChase later today after a quick visit to Hampton Court Ice Skating Rink.  Daisy continues to defy the odds and she is currently on intravenous antibiotics as well as her usual cocktail of drugs but nothing is going to stop her having fun this Christmas!

Happy Christmas to all of our friends and supporters! xxx

Daisy was an Angel in the School Nativity

With big brother Theo at the Shooting Star Chase Hospice Christmas Party

Spending her Birthday Money at the Oxford Street Disney Store!

Meeting Santa at the Wetlands Centre in Barnes

Birthday Party with Godparents & friends at Bloomsbury Bowling!
Posted by Picasa

A new phase begins

We have entered a new phase of our lives as a family with Daisy, the phase where there is nothing more that can be done, where the only active treatment now is the maintentance of her nutrition and management of her pain, no more tests that will change things, no more operations, there will be no transplanting of diseased organs for new ones (because the increased cancer risk of Costello Syndrome rules out the immunosuppressant therapy a transplant requires), no more long hospital stays, no more invasive procedures unless she is in a life threatening situation.  From now on all care will be managed at home unless Daisy's life is at risk.........and far from being depressing, this feels fantastic!

Now we have our daughter back and our family together.  Now we have accepted that the doctors have reached the end of the road we can concentrate on what is important - time together as a family and for Daisy, time to be a little girl again.

Daisy has enjoyed the run up to Christmas in school, playing an angel in her nativity and stealing the show when she told the rest of the cast to be quiet because Baby Jesus was sleeping.  She has had some fun times at our hospice and we have paid a visit to Santa to tell him what is on her Christmas list.

The price we pay is that our workload has gone through the roof and we still live with the worry of bugs and germs and infections and the responsibility we now have to decide whether or not to manage and treat her at home or to take her into hospital.  Years of living with Daisy have given us the instincts which tell us when to act, such as yesterday when we happened to be at Great Ormond Street for the annual Christmas Party.  My instinct told me that Daisy's hickman line was not quite right, I asked one of the nurse specialists to check it and sure enough, it would have probably broken, most likely on her birthday or Christmas, which would have meant a hospital stay until it could be repaired.  Fortunately there was time to repair it yesterday, and while I hate Daisy having a repaired line as this now means it has a point of weakness, it is better than a broken line.

The other thing we are having to accept is that Daisy will never be free of the bugs that colonise her - she normally has three main ones ; candida, pseudomonas and ecoli and now our battle is to keep these at a level where she does not become septic with them but in doing so we also have to ensure that she does not become resistant to her antibiotics.  She is increasingly resistant to an ever increasing range of antibiotics and this worries all the professonals who care for her.  She is currently on a month's course of intravenous antibiotics and has been on treatment doses of antifungals for weeks.  We will review the situation in a month and see whether she can switch to prophylactic antibiotics or she will need to switch to another drug. 

So ontop of TPN, bladder washouts, dressing changes, regular meds, enteral feeds and all the other stuff that comes with Daisy we now do regular intravenous medication.  This is what is needed to keep her at home, so this is what we do, with the assistance of occasional stays at the hospice when we regroup and get our breath back.  Daisy is so complicated and her care is now so specialised that it just makes more sense that we nurse her at home.  We now have nursing support four nights a week, although I still have to do the TPN and IVs but at least they can administer pain meds while I catch up on sleep.

Being at home for an extended period has meant that at long last we have been able to function as a complete family again.  Daisy's bedroom is now downstairs and has become the heart of our home, often she needs to just lie in her bed as her stamina is not great, and the children wander in and out, chat to her, read her stories, watch dvds with her. 

Andy and I have been able to be proper, full time, hands on parents with all the children, attending meetings at school, doing the school run, being there when they all come home, getting them back on track with their school work.  We were bursting with pride when Theo and Jules turned in the most brilliant performances in their end of term plays at Lantern Arts Centre recently and then the following week Theo just went one better by coming second in the regional finals of a Public Speaking Competition, representing his school.  (Here's the link to his speech

Over and over I have stressed that all my children are special, just that Daisy takes a little bit more of our time.  I never think of myself as having a disabled child and three able children, they are all able and unique in their own ways.  In fact, if we are going for labels then I very rarelly blog about the fact that my eldest son, Theo has a form of high functioning autism called Asperger Syndrome.  Sometimes (actually, most of the time), dealing with the challenges of Asperger's is harder than dealing with Daisy's medical needs.  Her needs are physically challenging, Theo's are emotionally challenging - for a few weeks after we brought Daisy home following the last surgery he could not settle, he was so anxious she would be taken back into hospital again.  Children with Aspergers need order, routine and predictability, something that can be very hard to achieve in our house so often having held it together all week Theo will have an all consuming migraine which will wipe him out for 24 ours.  We have also noticed how Jules and Xanthe have been forced to become independent very quickly, couple this with the challenges of the emerging pre-teen hormones in Xanthe and there have been a few shouting matches and groundings over the past month! 

But this is now normality for us, and it's great as we are all under one roof and when the children get up in the morning their sister is still in the house and she is at home when they come home.  We can't guarantee how long it will last, it really is one day at a time and as I said in a previous post, small goals - we have ticked a few things off the list - Singing Hands came to school to sing to Daisy and her friends, we visited Santa, she went Ice Skating (in her wheelchair), I saw her school play, we went to the GOS Christmas Party (even with a couple of appointments and a hickman line repair tacked around it!) and next week we have a trip to the Disney store followed by bowling with friends to celebrate her birthday.

7 whole years of life with Daisy, the biggest white knuckle ride of our lives, the biggest highs and the biggest lows and I wouldn't change it for the world!

Simple Pleasures

The simplest pleasures - I decided to travel to Great Ormond Street by train yesterday as I had been struck with the winter lurgy and couldn't face driving - Daisy loved the train, thedouble decker bus and the taxi, she waved at everyone, rang the bell on the bus and couldn't wait to get to school to tell her teacher about her big adventure. Sadly the tests at the hospital were inconclusive and didn't give us any answers to why Daisy continues to vomit so much bile despite her gastrostomy being on free drainage all the time but this was compensated for by the joy in Daisy's face on the journey there and back. It's a rare occasion that we actually thank Transport for London for being the highlight of the day!
And here are some more recent pics of life with Daisy...

A kiss from mummy before going to school

Not too happy about having to leave school early for a hospital appointment

A bed fit for a princess (and Donald, Minnie, Oso, Peppa...)

Small Goals, Big Celebrations

Well we left Great Ormond Street on Monday 17th October, very late at night (anyone who has been long term in hospital knows how long it takes to actually get out, especially with the wait for the dreaded TTO's - prescription meds to take home).  The plan had actually been to transfer to our local hospital but Andy and I decided unanimously that as there was nothing that the hospital was doing that we couldn't do at home so we did just that - and no-one objected!

Since getting home the work has started - each time we bring Daisy home after a long stay it's just like those early days bringing home a newborn baby.  The family has to adjust to a new person, new routine, this is what it is like for us.  Similarly, when you bring your child home from hospital after a long stay you expect things to be better, not worse.  Both are true for us, now we have adjusted to having a child with complex bladder issues, with even more pain medication, with even more sources of infection.  But the more things change, the more we rise to the challenge and the more determined we are to keep Daisy out of hospital and home with the family.

Which is why for the first time in years we actually managed a complete half term break together as a family, we even managed some days out and family time together.  This was all worth the huge military effort that had to go into place to make it happen, but it did happen, and for a fleeting few days we had what thousands of other families in the UK had for a week, a normal(ish) half term holiday.

So now we are midway through the second half of the term and it's taken this long for me to dust down the old blog and write.  Not through lack of content, but sometimes it's just hard to keep writing about the slow decline we are going through.  Even compared to earlier this year things have deteriorated.  Daisy has five different stomas/catheters that need to be dealt with, managed, dressed, washed out, cleaned, changed.... all can be potential infection sources. And infection is what we are battling with - the old nemesis Candida is back with a vengeance - colonising her bladder and two of her stoma sites, it is clearly making her unwell and causing her pain.  Having so many bugs in her bladder (she also is colonised with ecoli) means that the mitrofanoff catheter has to be on free drainage permanently to try and stop the continuous overgrowth.  She is also on permanent antifungals and antibiotics which are making her feel rough.  If the battles with the bugs were not enough we are having continuing problems with Daisy vomiting bile, mainly at night time and particularly after she has her meds.  The whole point of her gastrostomy is just to vent out bile, that also has a bag attached to it 24 hours a day, but something is stopping it working properly and Daisy will still vomit, despite our best efforts.

So we now have a child who has at least two drainage bags attached to her day and night and overnight (and often for a good portion of the day) an extension bag attached to her ileostomy bag to drain the watery, high volume output.  I find myself up to my neck in various body fluids at all shades of green a yellow and to add insult to injury the tiny (5cm) bit of rectum that was left following the colectomy surgery is still inflammed and bleeds most days.  Daisy's pain management regimen has gone through roof - she has a minimum of 24 drugs a day and often more.  She goes to school with a bottle of oxycodone now as the pain is starting to break through to the school day.  We still do not know what each day will hold.

But we can't give up on Daisy as her will to get on with life and overcome the obstacle after obstacle that is thrown in her way is huge.  Sometimes we stand back and ask are we doing the right thing for Daisy but just to look at her face when she is wheeled onto the school bus or has a visit to our hospice says it all.  All she wants is to be at home, school or hospice - these are the three places where she can be a little girl, she can feel safe and she can be happy.  We are doing everything in our power to keep her out of hospital at the moment, despite positive cultures, resistance to drugs, anaemia, increased pain, line infection risks, the pyschological impact of being a patient versus being a little girl cannot be underestimated.  For Daisy to keep fighting and to keep strong she needs to be happy, and if it means that we have to work even harder to keep her at home, so be it.

We continue to be so grateful for support of our palliative care team and our hospice, it is reassuring to know that their aim is that same as ours - to give Daisy a childhood as possible and to keep her as comfortable as possible.  We were over the moon to hear that we are going to be able to stay at our hospice for Christmas!  This will give us all a chance to enjoy Christmas and to be together without being sleep deprived or worrying about when the next med is due.  My mum is going to join us too which means Andy and I will be able to nip out to the pub for some grown up time too.

And of course, just before Christmas, on the 22nd December it's Daisy's 7th Birthday.  Seven years old - that is such a big age, I can hardly believe it, after all she has been through she will be celebrating her 7th birthday.  Every child's birthday is special but Daisy's is so special - she was born prematurely and spent her first 8 weeks in the neonatal unit, our Christmas that year was spent apart - I had a caesarean section, my first after three normal births, so had to stay in hospital, Daisy was in the intensive care unit and poor Andy had to soldier on at home with Theo, Xanthe and Jules aged 7, 5 & 2 respectively. They all came up to the hospital later on Christmas day with my dinner on a plate under some tin foil.  After that Christmas and Daisy's traumatic birth a couple of days before it doesn't matter where we are as long as we are all together, however being at Chase hospice will definitely be the icing on the cake.  Daisy's birthday is also a big excuse to party and we will be visiting the Oxford Street Disney store on the morning of her birthday for a bit of a shopping spree before meeting up with her Godparents and some close friends for a party in central London.

To get through this time of continuing uncertainties we set ourselves small goals - Celebrate Daisy's birthday, get to Chase for Christmas, then keep resetting new ones when we reach them, nothing too ambitious, things other people take for granted, but small term goals that can be changed if Daisy's health changes but things we can look forward too.  For the next few weeks I will look forward to Christmas, hopefully we will visit Santa at one of his stop off points in London, we will celebrate Daisy's 7th Birthday, we will go to Chase for Christmas, beyond that who knows, we remain in Daisy's hands but brave and indestructable Daisy continues to defy odds, scales huge mountains, challenges perecpetions day in day out so the least we can do is be there to help her do what she wants to do.

Waiting for the school bus wearing a new coat from Grandma and a Disney Santa Hat with her name on in from one of our friends at PostPals!

Watching Toy Story with Big Brother Theo - she adores Theo as he sorts out anything technical,  she calls him YoYo!

I wish someone had told me........

While having a quick tea break in the parent's kitchen today I got talking to the mum from the next door cubicle, recently arrived with a newborn baby.  As we chatted I realised that I could have been talking to the person I was nearly 7 years ago when I arrived at this hospital with a tiny baby and a whole load of question marks and worries about how her life would pan out, she too has 3 other children, similar ages to my children when Daisy was born (&, 5 & 2) and as we talked  and she shared her thoughts I realised I was telling her all the things I wish someone had told me all those years ago.....

So for the benefit of anyone else embarking on this journey of hospitals, disability and caring here are the things I want you to know -

  • Allow yourself to grieve - mourn the child you thought you would have, adjust to the child you now have and find a love for that child that you never thought possible

  • Worry about the future if you must but learn to go with the flow and live for the moment, as time goes on you will stop fighting the things you can't change and only focus on the things you can influence, you will find that you can live in the moment and gain perspective. 

  • Don't be afraid to accept help or ask for help.  That was the hardest thing we had to do, we saw it as an admission of failure, that we could not look after our own child, it is not.

  • Remember that you are your child's mother - when your child has complex medical needs and you spend so much time in hospital you become medicalised and institutionalised and bogged down in numbers, values, rates, ranges, results - monitor these things if you must but remember that your mother's instinct has never failed you yet

  • Look after yourself, if you fall apart you are no good to anyone.  I am determined not to turn into one of those women you see at the front of the hospital dragging on a cigarette, still wearing their pyjamas after lunch time - I dress, do my hair, stick on some lippy ready to face the day.  I go out for a walk every day, I drink skinny lattes and read the whatever is necessary to keep body and soul together through the stress

  • There is no such thing as the perfect family.  Look around you, the families you think are perfect, are not .
  • Your other children will get through this.  I felt so guilty that I had ruined the other three children's lives, I have not.  It's not what we planned for them but we hope that their lives have been enhanced.  They are more caring, they are more independent, they have had a varied range of life experiences already.  Yes it is really really tough on them having to be parented by rota or having plans cancelled at the last minute by their little sister's major spanners in the works, but they will survive and as Theo's play therapist once said to me " this is just how it is, no-one's life is perfect (see above)".  I truly believe they will be better people for it.

  • You will worry about money then you will discover what is important, you will stop sweating the small stuff and things will start to fall into perspective and with some careful planning and management you will survive the practicalities of this new life

  • Make lists, write things down, ask questions but don't always expect answers, know when to stop asking and just to live in the moment

  • Know that you are not indispensible - your child needs to be independent from you more than any other child. Your job as a parent is to prepare your child for the big bad world, when you have a child with additional needs - whether they are medical, physical or a learning disability (or in Daisy's case all three), this job starts on day one.  Leave them with a carer, leave the ward occassionally so they know you will come back, teach them independence, help them learn confidence and to be their own person.

  • You will have a life again, the extremes will be great, the moments of happiness will be concentrated into smaller timescales but you will apppreciate them so much more

  • You will meet people, go to places, experience things that your old life will never ever have introduced you to.

  • There will always be someone worse off than you, be there for them, people will be there for you

  • Savour every single day with your child, you do not know what tomorrow will bring.....

Is respite a right or a privilege?

Into week five now and this is where things get interesting - not for the doctors or surgeons, they have done their bit, and very successfully.  Now we are onto the phase of getting a regimen for Daisy that will keep her reasonably stable and minimise time at hospital.  The Mitrofanoff surgery was originally intended to provide an easy route for regular catheterisation, however inserting a catheter into the stoma is proving difficult both as Daisy finds it traumatic and because of all of her previous abdominal surgery it isn't the most straightforward channel to catheterise.  It has now been decided that she will have a catheter left in the stoma for a week at a time which we can drain during the day and keep on free drainage overnight, I am going to be taught to change this catheter and manage any problems that may occur with the long term plan being that we will build up changes so that eventually, several months down the line, we can catheterise Daisy intermittently and leave her tube free in between.  The theory behind all this is great apart from the fact that again she is open to infection from a permanently placed catheter and also bladder pain is a big issue requiring ever increasing doses of anti-spasmodics.  But what everyone agrees is that we will get there, at Daisy's pace and in Daisy's time.

And this is the issue - again Andy and I are taking on responsibility for managing yet another element of Daisy's care that is not common place in the community and we will need to be confident that anyone who is involve in her care understands.  Our concern also is the courses of antibiotics she has received over the past few years as she rebounds in and out of hospital with infections and sepsis, antibiotics which she is developing increasing resistance to.  Our hope is to stabilise this pattern and reduce the admissions but this needs a period of time when drugs can be tweaked and changes made to protocols so that when she does come home it is for a good period of time.  But does all this need to be done in an acute hospital setting?

Our other big concern as Daisy approaches 7 is for her mental health - this is a child who has spent more than half her life in hospital, who has been subjected to countless painful and traumatic procedures, she is making it very clear what she wants and what she doesn't want, and our role as her parents is to make sure that everyone takes her opinions into account too.

What Daisy wants more than anything in the world is to be with her family, all day long she talks (we always think of Daisy talking as she communicates fluently through signing) about her brothers and sister.  If an advert comes on the TV that she thinks Jules would like for Christmas she will tell me, if her Ipad doesn't work she calls for Theo, if we are choosing her clothes to wear she tells me what Xanthe likes.  Daisy loves being part of the family and wants for us all to be together again,..and that is what Andy and I want more than anything else .  A referral has now been made for care at The Children's Trust at Tadworth but I keep being told unofficially over and over that there is no way our PCT will fund a transitional stay at this facility, even though it will provide holistic care for Daisy and support for the family en route home. The possibility of transition via our hospice for an extended period is also not an option, they are so stretched that committing to taking a funded child for a long term child is not possible although there is a glimmer of hope that we may be able to have a short stay for a few days.  The only other options are to just bring her home or to transition via our local hospital, which would give the team there a chance to get used to her latest drug/catheter/TPN/Stoma regimens - these latter two options do not really allow us much opportunity to just be parents to Daisy.  Our biggest hope, and our request to our local services, when we first knew that Daisy would have this big surgery was that we would be offered the chance to have some time to catch our breath before coming home, away from an acute hospital setting with medical support so that we could remind Daisy and the other children that first and foremost we are their parents and spend time together as a family without having to worry about fully managing all of Daisy's care.  Sadly my fear is that we will be so ground down by the relentless strain of never seeing eachother, trying to juggle childcare, trying to be in several places at once that we will throw in the towel and just take Daisy home and try and manage as best we can.

Over the years, as Daisy has become more and more medically complicated and the care involved more specialised is seems like the support we need to get a break from caring is being whittled away.  Without support (as I always emphasise - at not cost to the taxpayer!) from our wonderful hospice Shooting Star Chase Andy and I would get no break from the constant care that Daisy needs.  We do have a funded package of support provided by Social Services but it does not allow us a break from looking after Daisy (it used to but sadly as Daisy has become more complicated the support package has decreased), it merely props us up in order to care for her.  We have PCT funded night nurses now - initially we were allocated 3 nights a week but following their professional feedback on the level of Daisy's care needs this was increased to 4 nights (bearing in mind we have only been able to use them for a few weeks this summer in between hospital stays!.  On a night we have a nurse booked she will arrive at 10pm and I will hand over how Daisy is doing, this can take a while so I don't get to go to bed until 10.30pm, so much for having an early night.  The nurse is able to administer the pain medication Daisy needs into her tube but if intravenous pain medication is required she has to wake me up, similarly if Daisy is unwell and needs to be transferred to hospital she has to wake me up and then can finish her shift early.  I have to get up at 7.30am in order to have a handover on how the night went and prepare to disconnect Daisy from her TPN and get her ready for the day.  When the nurse is in the house, we are not allowed to leave.  Apparantly this is our respite - sorry, but I thought the opportunity to have a night's sleep every other night was a basic human right?  We receive some direct payments to buy in care, but the carers cannot be left unsupervised while Daisy's TPN is running and we cannot be too far away when it is not, occassionally we save up our direct payments money and blitz it on a four hour babysit from one of the hospice nurses - I won't say how much it costs but if you consider that Daisy is classed as high dependency you can imagine the hourly rate.

So I'm thinking about my own fantasy bucket list that the people behind desks who make decisions on who should receive funding should read:-

Things I would like to do:-

Have a weekend away with my husband, without children

I'd like to take all three of the older children to the cinema/theatre with Andy rather than toss a coin on who stays at home

I'd like to go on holiday and not return more knackered than when we left - holidays are wonderful but they also mean that we get no night care at all so not only are we managing the days we are struggling with the nights

I'd love a weekend away with my girlfriends knowing I'm not leaving Andy managing four children and all of Daisy's medical care for the weekend

I'd love to go back to work part time - how can I when Daisy spends so much of her time in hospital and always will?

Reading this through I sound so negative - truly I am not.  I am so grateful to have Daisy in our lives, she makes our family complete. I also know parents who have lost their children who would do anything to swap places with me.  She is the funniest, feistiest, little girl I know and I will do anything for her, I am so grateful that she is still here and fighting her corner constantly- and that's the hook, at the end of the day, no matter how much crap is thrown at us, we will always do whatever it takes to keep our family together and to give all our children some sort of childhood, regardless of our problems.  So we will keep struggling on, battling bureaucracy, educating ourselves on our rights by trawling through endless government white papers and charity publications on the rights of carers while knowing that they count for nothing in the real world.  We can say things like; "well if we just give up then they will have to pay for Daisy's care and that will cost them a huge amount more" - but everyone knows we won't give up, we'll keep fighting, and it's a fight for all of us carers of the most medically complex, forgotten children - for an occasional night off, to be parents not carers once in a while, to be a couple, to be a family...

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....

Happy Days

Happy days in Highgate

Visiting Peppa Pig World

Chilling with big sis Xanthe

Surgery Plans

Oh my goodness, a whole month has flown by and I have not updated this blog - big apologies!!!  I think I'm going to cut and paste some of my statuses from Daisy's Angels ( from now on so that those who don't use facebook can still see what is happening in our lives...

It's been a funny few weeks, lots of real progress in terms of plans for Daisy, more emergency trips by ambulance and time at our local hospital and we are even managing time at home - for the first time in years I'm actually getting to spend part of the summer holidays with all the children under the same roof.

The biggest news is that we had our much anticipated meeting with Daisy's surgeon at Great Ormond Street.  This was the meeting to discuss whether or not a colectomy was an option for her and whether he was even prepared to carry out the surgery.  Andy and I had talked and talked about this prior to the meeting, veering from being 100% sure we wanted to go ahead to deciding that it was not an option as there were no guarantees.  In the end meeting with the surgeon reassured us of the safety of performing the surgery, he will not perform a full proctocolectomy as this is just too big for anyone let alone Daisy, instead he will take out most of her large bowel which will hopefully massively reduce the colitis symptoms she experiences every day.  It will also mean that she can come off the drugs which supress her immunity and render her at risk of infection and we can treat the colitis more conservatively.  This will not be the only surgery Daisy will have at the time, Daisy's Urology surgeon will also perform surgery on her bladder at the same time to help manage the symptoms of it's deteriorating function.  Initially the plan was to form a vesicostomy, a stoma, from the bladder into her abdomen to allow urine to drain out into a nappy.  After much consultation and discussion however everyone agreed that this was not an option for Daisy, a little girl desparate to get out of nappies.  Instead along with the colectomy surgery Daisy will have a Mitrofanoff procedure where the appendix which will be removed as part of the colectomy will be used to form a channel from her bladder to her abdomen allowing us to catheterise her intermittently.  Individually these surgeries are big, performed together on a girl who is not in optimum health they are huge.  She will need to spend some time post operatively in intensive care and it is likely that we will be looking at another prolonged stay in Great Ormond Street, however our hope, which comes with no guarantees, is that once she has recovered from the surgery, we can reduce some of the drugs she is on which have such awful side effects, her pain may be more manageable and she will be less susceptible to the infections which often lead to emergency trips to the hospital.  Making the decision to go ahead with the surgery was the hardest decision we have had to make for Daisy - we don't know if it will make things better or worse but the main thing that swung it for us is that she or we can't keep going on as she is.

The pain she experiences, mainly at night, is getting worse - she now has regular doses of morphine plus ketamine and then when this doesn't work sedating medicine to help her sleep.  We are seeing a big deterioration in her health, her hair is falling out, she is getting tireder.  But her lust for life is immense - she managed very few days in school this year but every single day was packed to the brim, she won a medal in sports day, had fun times with her friends, learned new skills.  She is vocalising more and more, singing away to herself in bed and her hands never stop signing.  She has so much she needs to do and this is why we made the decision to go ahead with the surgery - desparate times call for desparate measures so although it doesn't have any guarantees to take the pain away we just hope that it will keep her hospital trips down and improve her quality of life so that she can enjoy the things she loves in life.

In the past month we have called 999 three times, each time Daisy has spiked high temperatures and developed sepsis, mainly from the bugs (ecoli & candida) which are permanent residents in her bladder.  I used to drive her to hospital myself when she became ill but she is going downhill so quickly now we have been told not to risk it, so now the whole neighbourhood knows when Daisy has gone back into hospital.  But as quickly as she goes downhill, Daisy can bounce back once she has had enough doses of IV antibiotics.  So the moment she can come home we have been out and about having fun as a family.  We visited Peppa Pig World earlier this week - Daisy was beside herself with excitement, as everyone who knows her knows, she adores Peppa Pig, almost as much as she loves Mickey and Minnie.

We are keeping everything crossed that we can also manage a trip to Devon towards the end of next week, Daisy will be able to meet her new cousin and we will be able to have a lunch to celebrate my mother's 70th birthday (Daisy will be in Great Ormond Street when it is Grandma's birthday so we are having an early celebration).  We have been given a date of 9th September for Daisy's surgery, this gives us a few more weeks of family time and also hopefully gives us a chance to be out of hospital in time for Christmas.  We are in Daisy's hands as always but have learned flexibility and whatever happens we will adapt to make the best of the situation.

While staying at the hospice Daisy was delighted to receive a T shirt of her namesake from one of our friends at Post Pals (

Give us a break Mr Cameron

Well as always the long gap between posts is because the best laid plans in our world really never go according to plan.  I wish I had the luxury of time to do more frequent updates but I squash my blogging in at the end of what is normally an exhausting day....and that is most days at the moment!  (for those of you on facebook I have setup a page where you can get daily updates on Daisy, it's at, and for those who use twitter, I tweet as @stephnimmo)

Of course I should have realised that the "odd temperature spikes" that I referred to at the end of my last post would actually become something more than that - while at Chase, Daisy developed a very high temperature, reaching the level where we have to take her back into hospital.  However having just reclaimed her back for ourselves, Andy and I were loathe to take her back to hospital, especially as the one nearest our hospice is not our regular haunt.  We dug our heels in as in herself Daisy was well, and once again the wonderful team at our hospice helped us by arranging to have her bloods processed at the nearest hospital and also for IV antibiotics to treat  what turned out to be yet another urine infection.  We were also able to transfer to Shooting Star hospice which is under the same management as Chase Hospice and is significantly closer to home for us.  This meant we were able to manage all of Daisy's IV treatment with the support of the hospice nursing staff rather than struggling on at home.

So we arrived home properly after a lovely 10 day respite break on June 17 and we had a family day out to Wimbledon Village fair the next day - sadly this was rounded off with a call for an ambulance as Daisy's temperature sky rocketted the moment I flushed her hickman line to connect her TPN, no time to spare this could be a line infection! More IV antibiotics, more juggling childcare, but at least we were closer to home.  This also meant that although Daisy was back in hospital I did not have to miss my longed for return to Glastonbury Music Festival with Theo and Xanthe.  Those few days in Somerset, in the craziness of the festival, ankle deep in mud, camping in the rain, helped me recharge my batteries and find a little time for me.  We arrived back home on the Sunday, Daisy had been discharged from hospital and we tried, once again, just to function as a family of six under one roof.

Daisy went back to school for her first full day since February last Monday.  She was so pleased to see her teacher Beth and her intervenor (specialist assistant for dual sensory impaired children), Carmen again as well as her school friends.  I know everyone at her school, Linden Lodge, was delighted to welcome her back.  They have always been so accomodating of Daisy's ever increasing medical needs and frequent hospitalisations and are one of the few constants in our crazy world.  Last Monday was a really hot day and by the evening Andy and I put Daisy's lethargy down to being overtired, although in the back of our minds alarm bells were ringing.  By 6am the next morning Daisy had spiked yet another temp. It broke my heart to call the ambulance, we could not wait until the other children had gone to school so with only one full day back at home and her siblings eating their breakfast and getting ready to go to school, Daisy went back to hospital again.  A week later she is still there.

She has finished her IV antibiotics, this is the fourth course she has been on since staring back on immunosuppressant therapy for her diversion colitis around 6 weeks ago.  The colitis has not improved but in herself Daisy has got worse, infection after infection and with the constant antibiotic usage she now has a candida infection in her bladder.  This is being treated in hospital as there is a big risk of the candida bugs translocating into her line and once candida gets into a hickman line not only is it a very serious infection it is very difficult to treat and the line has to be removed.  She is on her 7th hickman line at the moment and we want to keep hold of this for as long as possible.

At the moment Daisy has a urethral catheter in situ as her supra pubic one (her second) fell out.  Next week we will meet with her urology surgeon to talk about a vesicostomy which is a permanent stoma from her bladder, this will mean she will no longer need a catheter but will always be in nappies.  We had hoped to avoid this situation as most children with Costello Syndrome are potty trained sooner or later, however we have now realised that this is the least of our issues compared to everything else we are facing.

The biggest issue is whether Daisy remains on immunosuppressant therapy or steroids - in staying on them we are hopefully preventing the diversion colitis from becoming worse although it is likely that she will continue to have flare ups which will require a hospital stay and IV pulsed steroids (which she hates as they make her feel awful) the alternative is the procto-colectomy surgery.  This had originally been discounted by the gastro team however now that she is getting infection after infection on the drug therapy her Gastro consultant has asked her surgeon to consider whether he would now be prepared to do this surgery.  This would probably be an open procedure as opposed to keyhole as she has had so many surgeries before, it would involved complete removal of her large bowel and rectum and negate the need for drug therapy to treat the diversion colitis.  We meet with her surgeon next week to discuss all of this.  There are huge risks with both options and the decision we are being faced with is one that no parent should have to make, but at the end of the day Andy and I have to be able to say that we did everything possible for Daisy, and our instinct is that, despite the risks, surgery gives her a fighting chance of some sort of quality of life, even though it means yet another extended stay at GOSH.

So we are now reaching another crossroads in our lives with Daisy and the decisions we make for her are harder and harder.  What is even harder is the unpredictability of our lives, difficult enough for any family but try managing our situation where one of the children has Aspergers syndrome and craves predictability, routine and stability.  We can offer none of this to Theo at the moment, and at times it is a struggle for him and for us as we try to keep things on a relatively even keel for all the children.  It is not only Daisy's life that is being affected but her siblings lives, often Andy and I feel that we are parenting by rota - one is at the hospital while one is at home.  We juggle constantly, but we are still determined that our children should have a childhood so we push ourselves to the limits to ensure trips to concerts, the cinema, birthday parties are arranged - the majority of time with only one of us able to participate while the other cares for Daisy.  Family trips are difficult to plan as we really do not know what each day will throw at us, so we seize opportunities when we can .  We can't go far afield - and by this I mean to visit family, for fear of ending up in a hospital which does not know Daisy.  This world is very isolating and immensly stressful and we have tried to make sure we look after ourselves so that we do not buckle under the stress.

So how are we expected to look after ourselves when we do not get any proper respite as a couple or a family from the stresses and strains of our life?  The only true respite for us is when we stay at our hospice - there we know nurses will care for Daisy giving us a break, we can stay with her as a family or we can leave her there in order to have time with the other three children.  Children's hospices receive no government funding, they are funded solely on voluntary donations, we receive 15 allocated nights a year to stay at our hospice at no cost to the taxpayer but with the benefit that we do not fall apart from the stress.  We had also been awarded two funded nights a month at the hospice, paid for by our Primary care trust as no other respite package or facility was in place locally or could meet Daisy's needs.  This was how we were able to transition from our long GOS stay to home via the hospice, by using the nights we had not been able to use while in hospital.  So you will understand my frustration and anger with the system I am up against when I tell you that we will no longer receive these nights any month Daisy is in hospital (so that's July up the swannee) - apparantly when Daisy is cared for in hospital, this is counted as respite, even though Andy and I do her TPN, administer her drugs, change her stoma bags, replace blocked jejenostomy tubes, act as her translator, play specialist, occupational therapist, physiotherapist - oh and be her because our daughter has the misfortune to be very ill a lot of the time she costs our Primary Care Trust a huge amount of money, money they have to pay to the Hospital Trust each time she is an inpatient.  This is how the NHS internal market works and sadly the sicker and more complex your child the more money they cost and it would appear the less likely you will be to get respite support.

Andy and I are creaking under the strain of looking after Daisy and the other three children, we have been promised a nurse three nights a week, however this may not happen until the end of July and all this gives us is three nights where we don't have to physically get up to Daisy when she cries, we can't leave the house and the nurse will not do TPN (they will be able to administer her pain relief though so I suppose this is some help, if it every materialises).  Our funded nights at the hospice have gone because let's face it, will Daisy ever complete a month when she is not in hospital.  This means that we are still condemned to parenting by rota, not able to go to the cinema, book theatre tickets, visit our families, make any plans...all those things we used to take for granted, and all because we have done the right thing and have chosen not to give up on our child.

I would love 5 minutes with David Cameron, who made such a deal about defending the rights of carers in one of the televised election debates - I would ask him why are we in a situation where  parents of the most complex, fragile children who are doing what is morally right by caring for their child actually have less rights and freedom than prisoners.  We chose this path, we knew Daisy would be disabled, we chose to be trained in all her medical care, we will never give up on her but sadly it really feels like by doing the right thing we have done the wrong thing.  Perhaps Andy should give up work too and we can both claim benefits, perhaps we should leave Daisy in the hospital long term so that we get a break???  Obviously anyone who knows us knows this is not going to happen...but it does make you wonder why our child is seen as a cost and the more complex she is the higher the cost and therefore the lower the support package....where, Mr Cameron, is the logic in that?

Family Reunited

At long last and 15 weeks after being admitted for a 5 day admission, Daisy is safely tucked up in bed in our beloved Chase hospice. Her arrival here, not suprisingly delayed by several more gigantic spanners in the works.

The temperature spikes I blogged about in my last post were after all caused by a line infection and Daisy was very poorly for two weeks.  At one point she was on five different intravenous drugs plus iv pain killers and all her usual meds.  The poor nurses looking after her on a one to one basis worked non-stop and went home exhausted. The infection was not shifting and turned out to be a fungal infection which meant her hickman line had to come out.  In  order to prevent re-infection  the best option was not to reinsert a new central line immediately but instead insert a temporary PICC line which is like a very long canula but could be used to give TPN.  To do this Daisy needed the Interventional Radiology Service in GOS.  A service we are always so grateful to have available to us as they have optimised the potential Daisy has for line insertions however the downside of this very specialised service is that they only operate during weekdays and between the hours of 9 -5 (with a break for lunch of course, this is the public sector!).  So Daisy had to wait her turn among all the other top priority children in GOS, it is easy to become deeply frustrated with this situation until you remember this is no ordinary hospital, there are very few paediatric interventional radiology services and the children they are dealing with are the most difficult.  For Daisy multiple previous line insertions means that we need the best expertise available to ensure that we do not lose ever decreasing line sites.

Eventually Daisy's line was taken out by the surgeons as she was becoming increasingly unwell and we had to rely on two very precious canulas, inserted by anaesthetists to provide fluids and iv drugs until the interventional radiology slot became available.  Within hours she lost one cannula, her little veins are so scarred from previous lines and we held onto her other  cannula for a day until that went too and she had to be sedated for a new one to be inserted as every procedure was becoming so traumatic.  Eventually, Daisy's name came up for her slot in interventional radiology - following some timely intervention from the on call gastro consultant who questioned the ethics of continuing to keep a child whose only source of nutrition was via a central line waiting for more than 24 hours.  Instead of a PICC line she ended up with a new hickman line as the delay had worked in our favour, she had been 72 hours free of plastic in her main veins and hopefully this had put paid to any lingering bugs.  At the same time she had to have a new supra pubic catheter inserted, her brand new one, inserted the previous week had failed and come out and the tract where it had been inserted had closed immediately.

The new catheter insertion caused very heavy bleeding and Daisy needed 3 transfusions of FFP or fresh frozen plasma as well as a blood transfusion.
By the beginning of half term things  were looking good following what we thought was the last minute drama stopping us from getting to Chase Hospice.  I took the older children to my mother's house in Wales as it was the start of yet another half term holiday with Daisy in hospital , and Andy and I made plans for a hospice transfer on the Tuesday with a family reunion on the Wednesday.  We even pushed the boat out and stayed in a hotel on what we thought was our last night in hospital........only to be greeting first thing on the Tuesday morning with the news that the brand new hickman line had migrated into her chest cavity and overnight Daisy's neck had swelled up and the plastic surgeons were reviewing the situation...

I'm very glad I did not see Daisy immediately after her line had moved from the jugular vein spilling TPN out under her skin, apparantly it was not a pretty site.  When we saw her she was black and blue and very uncomfortable.  The good news was the the Plastics team confirmed that there was no lasting tissue damage the bad new was obviously we were going to lose this precious line.  So the next day Daisy went back to interventional radiology for her 8th anaesthetic and 7th central line.  To say she was fed up is an understatement, she just wanted to get out of the hospital and get away.  Ontop of this she was coverered in bruises caused by her poor blood clotting, a side effect of the liver damaged caused by long term TPN use.  However she recovered well from this final surgery and made it known to everyone sho came near her that she wanted to go. So after 15 long and traumatic weeks we left Rainforest Ward and transferred to Chase Hospice.

We had asked our consultant at the very beginning of our hospital stay for a second opinion on Daisy's treatment, not because we had any doubts about the treatment she was receiving but as her parents it is vital that we leave no stone unturned in our quest to give Daisy the best posssible quality of life.  We were very fortunate that he was able to arrange for a Professor from the US who is a world expert on Paediatric Dysmotility Disorders to come and review Daisy when he was passing through London for a couple of days en route to a conference,  Meeting the Professor was both reasurring and daunting - reasurring because he confirmed to us that Daisy is looked after by the best in Europe when it comes to her condition and that everything we have done so far is what he would have done, daunting because her complex condition is so difficult to treat and the reality is that things have not progressed massively in 30 years.  He wondered if Daisy's condition was the result of a mitochondrial disorder and therefore, as we have always suspected, a separate condition alongside her Costello Syndrome.  He also confirmed that the pain she experiences is very difficult to manage, her neural pathways have been bombarded over the years so that they are very receptive to the pain she feels from her gut making treatment of the pain very very difficult, the reality is she will never be completely pain free.  He felt that we now face two choices - to keep her on the immunosuppressant therapy and steroids which keep her colitis and bleeding in check but massively increase her risk of infection, particularly line infections, which can be so damaging to the liver, or remove the need for the these drugs by removing the cause, her large bowel and rectum.  However this surgery would be highly risky and probably not possible as a keyhole procedure because of her previous abdominal surgeries.  It's a damned if you do, damned if you don't situation however as her parents our instincts are to get Daisy off the drugs which we know from previous experience make her so ill, her recent line infection occurred a matter of weeks after starting the immunosuppressants again, however to do this we have to consent to the biggest operation of her life, with only a 50/50 guarantee of taking away the pain (but at least taking away the immunosuppression).  Ultimately it does depend on whether Daisy's surgeon is prepared to take on this risk and her Gastro Consultant has promised to have this conversation with him.

So this is how we left hospital, with the prospect of a return, hopefully in the autumn allowing us a summer at home but early enough to guarantee Christmas at home too.  Our family was reunited on Friday evening and thanks to our wonderful Chase Hospice, and despite some odd temperature spikes and hairy moments from Daisy, we have started to relax and live in the moment, knowing that each moment is more and more precious

The worst hospital stay ever

I hate rollercoasters, why would anyone pay good money to scare the living daylights out of themselves all in the name of having why are we still on this non-stop rollercoaster feeling like it's Groundhog Day over and over?  Week 13 in the Big Brother House and Daisy Nimmo is still doing time in her cubicle on Rainforest Ward....

Where to begin, this is truly the worst stay ever and probably because of events that have panned out since my last post.  Daisy got the catheter eventually - ironically it was a perfect example of when poor communication works in our favour.  I was sitting having coffee with a friend when the ward sister called me on my mobile to say that an anaesthetist had arrived and did I know anything about a catheter insertion slot that afternoon?  Turns out the Urologists, who had been waiting for a "special type of catheter" for Daisy had booked her an elective surgery slot but completely forgot to tell the Gastro Team, Ward doctors or ourselves.  At least the fact that Daisy has a non- functioning gut was another factor in our favour as she was good to go for surgery that afternoon.

And so the catheter was inserted and the cystoscopy showed that her bladder was inflammed as a result of repeated UTIs.  Not suprisingly the catheter was not the magic cure all, in the same way as her ileostomy, it has proven to be a necessary evil throwing up more problems.  Daisy experienced a lot of bladder spasms, blood and pain from the catheter and has been maxed out on pain medication, however at least we have been able to drain away the excess urine which her bladder was not able to empty and hopefully prevent any more UTIs.

The friend I had been having coffee with when we got the call for the bladder surgery is another mum who has shared a similar path to us, both at our local and at GOS, but living through the rollercoaster ride of cystic fibrosis with her daughter.  We live locally to eachother and through our shared experiences and lives have become very close over the years, so I was happy but sad when I had a text from her to say that "my drinking buddy was back" this meant her daughter was being readmitted after only 5 weeks at home but at least I would have a kindred spirit with which to share a bottle of red at the end of a testing day.... As it was I was so glad I was there as later that week, and completely out of the blue, she was told that there was no more that could be done for her daughter, her lung function had deteriorated beyond help and she had only days to live.  Sadly she gained her angel wings on Tuesday on the ward at GOS and is now resting peacefully and breathing easily again at our wonderful hospice, Chase, while her family come to terms with life without their little girl....

As you can imagine this has thrown up a multitude of emotions for us, sadness for a friend grieving for her daughter, grief at the loss of a beautiful little girl, fear at the possibility of our own loss.....

And in true Daisy fashion, just as my stress levels were being maxed out on the rollercoaster she throws another spanner into the works but spiking high temperatures and sepsis.  For 6 days Daisy has been spiking high temperatures, vomiting and having episodes of rigour and sepsis, she is on 5 different IV antibiotics and an antifungal and not responding.  Her blood cultures are negative and the experts in GOS are scratching their heads.  She has five different sources of infection - a hickman line, a gastrostomy, a surgical jejenostomy, an ileostomy and a supra pubic catheter so where is the infection coming from?  Correct that, actually it's four sources - the supra pubic catheter came out before a viable tract could form and she is booked for another surgical insertion next week.....

The assumption is that the infection is from the line but if we remove the line we limit her options for further line insertions.  Today was spent discussing with surgeons and doctors whether or not to remove it...I am constantly being forced into making decsions which could have serious consequences - if we keep the line will the infection overwhelm her, if the line goes will we reduce options for line insertions.  What if we are missing something by focusing on the line?  What if it is an inflammation of her heart valves? or appendicitis?  Daisy does not present in the way text books say she should, all we know is that her inflammatory markers are rising and she is not responding to antibiotics.  However during the day she is still smiling and still interested in the TV and this gives me hope.

I have told the doctors that everything must now be focused on getting her into a stable and safe position so that we can transfer for a planned stay at our hospice on 29th May - we need time together as a family and this is our number one priority.  This week's events have shown us that we have to seize every opportunity to be together as a family.  The doctor's know this, they know that time is precious for us, and this is where I get my strength , by focusing on the most important thing, getting us all back together again.

This post is dedicated to a beautiful little girl, Alica Roa, age 10 years 5 months, who lived life to the full and to her fab mum Catherine, a true friend (& drinking buddy!) - xxxxx <3

Dear Jane.........

This post has been sitting in edit mode on my laptop for a few weeks now, waiting for me to tweak it and post it, I find myself sitting in a tiny room in the parent's accomodation wing at 3.55am in the morning, unable to sleep yet again and now I find time to finish this post and update.....sorry for the odd timeline but it's just impossible to write during the day with Daisy, I am either spending time with her or talking to the various doctors and professionals who stream into and out of our lives over the week.  Weekends are for family visits, and night-time is for mulling over what has happened during the day or swapping shifts with Andy................

A week is a long time in the world I find myself inhabiting, and just one week on from my last post it feels like we have moved forward at nano-speed in all areas of our life. I came home for the evening on 5 April and Andy was staying at Great Ormond Street.  At 5.30pm he phoned me to say that one of the Gastro Consultants had come to see him to say that Daisy would not be able to have a slot for the surgery to place a surgical jejenostomy until some time during May.  This was going to condemn her to at least another four weeks in her cubicle, attached to intravenous pain relief, with no feed and TPN running for 24 hours a day....clearly this was not acceptable, what had gone so wrong that we found ourselves in a situation where our childs needs were no longer seen as urgent....

Andy came home on the last tube and we fired up the laptop, opened a bottle of wine and began to write:-

Dear Jane Collins (the Chief Executive of Great Ormond Street Hospital) ...We are writing to register our formal complaint that regrettably after a generally positive  6+ year relationship with Great Ormond Street Hospital we feel that our daughter, Daisy’s care and clinical management is substandard and not supporting the objective of improving the quality of her life...

We described, over the following four pages, the impact of not having a surgical jejenostomy was having on her life and our family life.  How basic processes in communication and patient advocacy had left us in a situation where our family would continue to sit waiting for things to happen for at least another four weeks....four weeks where Daisy was condemned to life on TPN for 24 hours a day and at constant risk of developing infections.

Within 12 hours our world changed, people we had never met before appeared in Daisy's room and most importantly the surgeon who had performed her ileostomy last year appeared in her room to tell us that she had been put on the emergency list for surgery the next day.... by Thursday evening Daisy had her surgical jejenostomy, technically called a roux en y jejenostomy and although she was not coping too well with her breathing post anaesthetic was back on the ward and we could start to think about life away from hospital again...

We are now 2 weeks post surgery and Andy and I have mulled over why did it take a letter to be the catalyst to action.  We are so fortunate to be able to articulate our concerns and to be able to stand back and use our experience as business professionals to look objectively at why processes had failed to support the overall objective of the child first and always.  We have never ever criticised Great Ormond Street Hospital and never will - our daughter owes her life to the care and expertise of the many people we come across every time we come to this hospital.  However some of the basics of communication and ownership of issues are so clearly missing in some areas leading to situations where children wait for procedures and plans to happen.  What was missing in Daisy's case was a clear sense of ownership of the problem and that word which we have used so much recently, advocacy, for her needs.  As her parents we trust that people are fighting her corner when she needs things to happen, in many cases this does happen and we know of some brilliant people who are constantly fighting Daisy's corner. But when your child is so complex and teams rotate on a weekly basis who is making sure that things are still happening when they should?

Our letter of complaint has become a catalyst for a root/cause/analysis of this situation - parents of complex children need to be parents, we are advocates too but we trust that the health professionals are then making sure that they are representing our child's needs among all the other priority children.  Andy and I did not want our complaint to be just about dealing with our situation, we wanted it to change things for the better, to look at where things have gone wrong and make a difference so that situations like ours don't happen. 

We now have over six years of experience of dealing with the machine that is the NHS, over the years our ability to deal with this has grown and evolved.  We have learned that we are essentially dealing with a huge, supertanker set in it's ways, but we have also learned that by finding the right people who can help you can slowly find a voice which people will listen too.  Whenever people ask me how to manage a situation I always direct them to the Patient Advice and Liaison Service (Pals) - every trust has one.  We have a long relationship with the Pals team at GOSH, to the point that we always pop our heads around the door, even to say that things are going well this stay.  Often I will go in and ask them to "liaise on our behalf" - sometimes a carefully worded email from Pals on our behalf is all it takes.  The Pals team know our situation with Daisy and know us, we have only ever used them when things are becoming difficult and are always clear in knowing what we want as an outcome. 

We know we are going to continue to have a long relationship with GOS, many things have changed for the better - the care Daisy receives on Rainforest ward is fantastic, so much better than the early days when we used to come to the hospital, things can improve and we have always taken the view in every aspect of our lives that you can sit and rant about it or you can do something yourself to improve things.  Years of diplomacy and tact pay dividends when you become viewed as parents who have views worth listening to...

So now Daisy has her jejenostomy at last and we are working towards increasing her milk feeds and reducing her TPN down from 24 hours so that she has time off.  We are also making more and more progress in managing her pain and identifying where it is coming from.  For years both Andy and I have been concerned that her pain is not just from her colon but also from her bladder.  Eventually the gastro team organised urodynamics testing which has identified another source for her frequent infections and pain - Daisy's bladder does not empty properly, this means that there is always a residue of urine left in it, explaining the reason behind the frequent UTI's and probably also explaining why she experiences so much pain at night as her bladder fills, goes into spasm and because of the UTI's is chronically inflammed.  The solution is to help it to empty.  The team here would like her to have a vesicostomy, yet another stoma, this time in her bladder so that excess urine could drain into a nappy.  Andy and I have not made that mind shift yet for another big bit of surgery or also to condemn Daisy to a life of incontinence when most of the mobile children with Daisy's condition do not spend their lives wearing nappies.  The second option is to fit a supra-pubic catheter which would allow us to drain the excess urine from the bladder.  This involves another general anaesthetic, it's seen as a medium term solution and in the longer term she would need surgery to provide a more permanent solution to her problems with her bladder.

So at least we have a lot more answers on why Daisy gets so much pain - it is from several sources, the diversion colitis, her dysmotile small bowel and, not suprisingly, a neuropathic bladder.  So you would think that given she is now doing so well establishing her milk feed, reducing hours on TPN and we have a good protocol for pain management that surgery to fit the supra-pubic catheter would be prioritised and we could move forward in our plan to transition from GOS to our hospice for respite before going home....

Well in a remarkable moment of deja vu I received a phone call from Andy tonight (it's always when I am at home and he is doing a shift at the hospital!) - at 5.50pm, the Urology Registrar came to visit Daisy to say that it would be likely that it would be a month before they could do the surgery......somehow I think we have been through this all before....however we have some good people who I will speak to tomorrow and once again in my role as Daisy's advocate point out that sitting in a hospital cubicle, at risk of infection (she is just recovering from a bout of shingles) while we wait for a procedure which will enable her to get home and live her life is not acceptable...

And so that is why I am finishing my blog in the early hours of the morning as I run through the conversations I will need to have yet again later today.  It's not my daughter's medical problems that cause me sleepless nights, these I can deal with, she is strong and a's the fighting and battling I have to do on her behalf to get her the things she needs to live her life, that's what saps my strength and energy.

Better close down the laptop now, big day ahead, fingers crossed the next post will be a positive one!