Not Waving But Drowning

Yes, I am still here, I know that it's been a while since I updated but as you can guess from the title of this blog, life has just been a bit too overwhelming to find the time/motivation/energy to fire up the laptop and write about it, but I think I have my blogging mojo back and in the interests of ensuring that the world understands what it is like for families like ours it's time to pick myself up and get the words down..

I hardly dare to write this but it's been two months since Daisy's last emergency hospital admission.  Two months where well meaning people who don't know my world equate no hospital stays with Daisy being well.  If only this was the case, no hospital stays are because every day is a battle for us to keep her out of hospital. Not being in hospital does not mean that she is better, it means that bar a life threatening emergency there is nothing else they can do for her.  And actually the definition of life threatening emergency seems to be stretching a bit now, a couple of years ago we had to take Daisy to hospital if she spiked a temp or had positive cultures, now we judge whether this is a "manage at home" situation or a "call 999" one.  The last admission was for intravenous pain relief but since then Daisy has been on various intravenous antibiotics at home to manage various bacteria which colonise the bits of plastic in her body. Now together with the TPN drip we put up every night and which provides her nutrition into her blood stream, we also draw up at least one antibiotic - a few weeks ago it was meropenem, now it's augmentin, IV antifungals are being mentioned too.....in addition to this, because of her worsening foregut motility and severe reflux (we are not talking vomiting here, we are talking gut renching, blue in the face wretching and projectile vomiting of luminous yellow bile...) we also administer anti-reflux medication intravenously.  Drawing up an IV is not like pouring out a medicine, each iv has it's own way of being prepared - some (if we are really really lucky!) are ready mixed, most need mixing with something else - saline, water or some other solvent.  They need to be drawn up, measured, air bubbles dispersed and administered.  Sometimes as a slow push, sometimes as an infusion via a pump and always with a saline flush between each medication.  So another compromise we have had to make to keep Daisy out of hospital and with her family is to add intravenous medication into our daily routine.  But it is working and she is definitely better on IVs than she was off them.  It's just sometimes it would be nice just to be Daisy's mum, sometimes it would be nice to say "tell you what let's not bother with putting the TPN on tonight, let's go out to the park instead", sometimes it would be nice not to have to change her catheter knowing it's going to make her cry or drag her away from her toys to change her stoma bag because the contents are leaking all over her clothes and burning her already sore skin....sometime there are so many things I would like to do rather than be Daisy's nurse but this is the pact that we have made...for Daisy to be here with us, for Daisy to be enjoying life then this is how it needs to be.

It's just sometimes when I have a brief moment and allow myself the really think about the enormity of the situation I realise how unfair it is, on Daisy, on us, on her siblings.  Why does she have to have this rare, sporadic syndrome?  It's nothing to do with one of us carrying a rogue gene, or our age or race, just one of those, chance in a million (make that 28 million) occurences that could have happened to any of you.  So why then having this dodgy gene mutation does she then have to have intestinal failure meaning that she relies of chemicals and machines and plastic to live and then the final cruel blow - why does her bladder then decide that it's going to join the party too?  That's just not fair.

It's the ripple effect that's tough too - Daisy has three siblings.  These four children have one shot at childhood and while we constantly tell them there is no such thing as a normal family, a perfect life, I feel guilty at how sometimes I rely on their help as I change stoma bags and catheters and run through TPN when there is no other adult around to help me.  Ask any of my children about TPN, Hickman Lines, Mitrofanoff stomas, gastrostomies and jejenostomies and they will confidently tell you all about them, probably more confidently than a junior doctor.  They seem oblivious to the physical manifesations of Daisy's disease and see her simply as their sister and she in turn has them completely and utterly wrapped around her little finger.  Daisy rules the roost at our house, and given her larger than life personality I think she would still rule the roost despite all her medical problems.

But for all of us, while we present a facade of coping those feelings of drowning are bubbling under.  All three of my older children are receiving emotional support - one from CAMHS (child & adolescent mental health services) , two from the hospice and young carers groups.  Andy and I attend counselling sessions.  These sessions have given me time to reflect and take stock and think about me and what's important.  I felt that because I am intelligent, articulate, willing but I think above all, so desparate to have Daisy at home and keep the family together, I was being laden with more and more work and responsibility and risk to manage this.  I felt like I had been thrown into a lifeboat with a load of supplies and set adrift left to fend for myself while everyone waves from the land.  But the thing is, I am not waving, I am drowning - I am drowning under the overwhelming workload that comes with looking after a chronically sick child, trying to be there for the other children and listen to their problems, trying not to get angry with Theo's asperger's outbursts and meltdowns and reminding myself it's not him, it's the autism, drowing under the paperwork and bureaucracy that comes with my world.....and it seems to me that the more that the world thinks you are coping, the less likely it is to check if you really are.

So when I stood back after a recent long, all day appointment at Great Ormond Street and took stock of all the addtional meds and IVs that we were being asked to add in to our already packed daily routine and I had an epiphany and I realised I could just say no.  So I did.  It was not about putting Daisy at risk, it was about ensuring that overloading me (because remember it is mainly me, Andy works long long hours to keep a roof over our head) did not put Daisy at risk.  This was a really liberating feeling because suddenly the wheels of support starting to turn and a better, more manageable plan was formed, a plan that could be managed at home taking into account the workload and Daisy's needs.  Since that time I have been on a bit of a roll, realising that I don't have to do it all.  I have stood back and taken a look at my life and what is important, for me the most important thing is my family and my marriage.  Since having Daisy I have gradually acquired other projects and interests to take the place of the career that I had to give up when she was born, these things have started to take up more and more of my time away from the family and I have realised this is not what I want, so taking advice from the great Homer Simpson I have asked myself "Can't somebody else do it?" and I have discovered that I am not infallible, the world will not fall apart if I withdraw myself from a voluntary group or committee, there will always be enthusiastic souls like me who are happy to take on more than the lion's share of service to the community!

I have not given everything up though, I have made room in my life for something that is just for me, long distance running.  I have run on and off since I was twelve, I ran a marathon at 13.  I may not be fast but I have the mental and physical stamina which ensures that I can run and run.  And recently this is what I have been doing, I plug in my music and run, morning, evening, it does not matter, running is my prozac, it's my time out away from everything where I can meditate to the repetitive rhythm and escape into music and thoughts.  Running keeps me physically and mentally strong to keep going, because I have realised that life with Daisy is not a sprint, it's not a marathon, it's an ultra marathon, iron man, triathlon, decathlon endurance event and she, and the rest of the family, needs me to be up to the challenge.

So I have regained my mojo and with it normal (maybe a bit more streamlined and focussed) service has resumed.

It could be you

So how did I come to this point in my life where I made a shift from wage slave to benefit scrounger?

Up until November 2004 I had a full time marketing career, I had degree and a master's under my belt together with professional qualifications and memberships. I had travelled the world with work, managed multi-million pound budgets and had either worked for or manged the accounts of some heavy weight, blue chip companies.  The role I was in by November 2004 was supposed to be my "slowing down, being more close to home" job - I was head of Marketing and Student Support for a Further Education College.  The plan had been to take some maternity leave then return on a part-time basis, in time for the college's busiest time of the year, Student Enrolment.

I loved working, I loved the sense of identity and purpose it gave me, I loved being part of a team and being appreciated for a job well done.  I enjoyed dressing in "corporate" clothes, receiving my pay slip at the end of the month (even though a huge chunk of it always seemed to go on childcare!), putting my education and training into practice but most importantly it was great to leave it all behind at the end of the day and go home (well, when I wasn't travelling).  I was not ashamed to admit that going to work was a bit of a cop out, I was not cut out to be a stay at home mum.

I had a stereotypical view of people who claimed benefits  - I wanted to show my children that you could have it all, career and family and that an education was worth pursuing as it led to wonderful rewards.  I knew nothing of the world of disability, illness, hospices - except for once a year when Comic Relief and Children in Need was on the TV, at which point I would get my credit card out a pledge some money and think nothing more of it.

So November 2004, when I was 29 weeks pregnant with our fourth (and much wanted) child and second daughter, I had no idea how my world was going to change so dramatically and so permanently.  Being my fourth child I had a good idea when things did not feel right in pregnancy, I was being monitored for polyhydroamnios and I was now looking like a woman who was full term with twins, I was huge.  I wandered into my ante-natal clinic which happened to be on the way home from work and that's when my life changed.  I was admitted straight away. given steroids to strengthen the baby's lungs, and had several amnioreduction procedures to try and minimise the risk of pre-term labour.  As it was Daisy was delivered by c-section (a normal labour was deemed too risky as all three previous ones had been very long - and very natural!) at 33 weeks, three days before Christmas.  I spent Christmas in hospital, Daisy was in intensive care and poor Andy was at home 7,5 & 2 year old children.  I remember shuffling into the neonatal unit on Boxing day, clutching my meagre bottle of expressed milk to see the staff gathered around a TV watching coverage of the asian tsunami - and I wondered what had happened to the world, to my world...

Needless to say, despite optimistic plans and strategies I never did return to work and with a heavy heart I handed in my notice so that the college could get on with recruiting a replacement.  The world as I knew it had changed; after two months in neonates, Daisy did come home for a few (very fraught) weeks before being rushed up to Great Ormond Street Hospital at four months old for investigations for a possible tumour. She ended up staying there for three months during which time she visited intensive care with respiratory failure, had the first four of many general anaesthetics, was diagnosed with heart problems, a severe visual impairment and failure to thrive.  They did not find a tumour and we know know in hindsight the agony she was in and the symptoms she displayed were down to rare nerve disorder, probably completely separate to her overall diagnosis of Costello Syndrome,  in her gastro-intestinal system which meant that every drop of milk we were trying to force into her caused her huge pain.

We soldiered on for a few years, we embraced the diagnosis of Costello Syndrome, we even manage to attend the syndrome conference in Portland, Oregon.  I thought of ways I could get back to work in between the hospital stays, when we were lulled into a false sense of security as we managed a few months out of hospital and on a reasonably even keel.  We struggled financially on one income, but always in the back of my mind I thought this was a temporary situation and I thought that Daisy, like the other children with Costello Syndrome we had met would eventually stabilise enough for me to freelance occasionally or go back to college to train as a teacher.  I even started an application for a part time teacher training course..

Again, we had a turning point in our life with Daisy - September 2008, when after a difficult summer as she  struggled with pain and weight gain and only a week into starting school (and Theo just starting high school) she became unwell and we had to rush her to A&E for what we thought would be another few days of vomiting, fluids and then she would pick up.  But she did not pick up, she got worse and worse and eventually on being transferred to GOS and having upper and lower scopes she was found to have severe and agressive inflammatory bowel disease, we know now probably caused by the severed dysmotility and repeated attempts to feed her, and in November 2008 she started TPN and left hospital nearly 12 months after first being taken to A&E.

With TPN and Daisy's subsequent deterioration our lives, already changed, changed immeasurably.  There was not turning back, no hope for recovery, no part time work or college course.  During one of our long hospital stays Andy was made redundant and the unthinkable happened - we were both out of work, with four children, one of whom was needing 24 hour care.  Tax credits to supplement the carers allowance and Disabilyt Living Allowance were an essential part of our lives.

Andy and I would have driven eachother mad being at home together all day, so now he runs a very successful consultancy business.  This allows him some flexibility to fit around Daisy's medical needs, but most of the time I go to hospital appointments, clinics, procedures on my own as he has to work.  My full time job is Daisy and the three other children.  And it seems to me that with each year my job description keeps expanding and yet I receive minimal remuneration for it - I am now qualified to access a central line (many nurses will not/are not able to do this), I can catheterise a mitrofanoff stoma, change a stoma bag, replace a jejenostomy and gastrostomy button, I am fairly proficient in makaton sign language, I can administer intravenous antibiotics, make judgements on types of pain relief analgesia required.  And when I am not doing all those things I am checking stock levels of all the equipment and ancilliaries needed to run our mini hospital room, washing copious amounts of bedding after nights Daisy has spent vomiting or with a leaking stoma bag, cleaning, tidying, lugging heavy wheelchairs into the back of a car followed by lifting a 20kg child and various bags and attachments!  I did not anticipate the new languages I would have to learn - carefully choosing my words when I make requests of social services versus healthcare because using a word such as "respite" with the wrong person may just come back with the answer "that's someone elses budget".  I have had to become au fait with the world of statements and special education, and not just for Daisy - just incase I become too complacement I have another child with additional needs that can take me away from the day job of just being a mum - Asperger's and everything that comes with that syndrome has taken over our lives also.

I am a different person to the career woman I was 7 years ago, I have been to the edge I guess and seen another world and it really does put things into perspective.  I value what I do immensely, this is the most important, rewarding, bone-achingly tiring job I have ever had to do.  It's manual labour, intellectually challenging, goalpost moving, unrelenting, 24/7 slog.  This is not just about being a mum plus, this is about being a nurse, an advocate, a housekeeper, politician and diplomat......I get thanks and appreciation from my family and friends,  I know I am contributing to society, I am an essential component in the social and health care system, without me doing what I do the cost to the taxpayer would be huge as Daisy would need full time, funded specialist medical care in a residential setting. 

My reward is to see my children achieve and grow, I truly believe that the reason Daisy continues to live to fight another day is down to the skills and effort Andy and I have put in to make that happen.  But does our society value what I do?  I am dependent on tax credits and carers allowance, all £55.55 per week of it.  Andy works, sometimes I envy him that opportunity to escape into the corporate world and switch off.  I would love to put my new skills to use, now I google part time nursing degrees and daydream about becoming a Gastrointestinal Nurse Specialist......

This is why I write this blog, so that hopefully by sharing a bit of our lives people will understand our world and look beyond theirs.  We all walk such a fine line, we are all just a faulty gene, a birth defect, an accident or a chance happening away from entering a world like mine.

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!

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!

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 paper......do 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.....