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 improve....as 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!
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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 http://www.youtube.com/watch?v=d17tHznWWaU)

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!

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