Will David Cameron remember his promises to Carers?

I had a phone call at 11pm last night from a journalist asking if I would be prepared to comment on a radio breakfast show about the current story in the media involving the mother of a child with complex needs.  This mother had met with David Cameron before the election where he had promised to support carers, she is now at her wits end trying to care for her disabled child (she is also a mother of four) with minimal respite and had posted on Mumsnet that she was considering putting her child into care.  The journalist wanted to know what drives a mother to this point......

At the time of the call I was having a "bad Daisy night" (we class this as one where we have to give maximum doses of all her pain drugs over the night) - she was screaming in pain from her dysfunctional colon, writhing in agony and I was in no state to give any sort of sane comment to the press, however there is so much I want to say that I thought I would blog it...

Much as you can try, you will never know what it is like to parent a child like Daisy.  Andy and I are fairly stoic, old fashioned in some ways, in that we try and get on with things. It has always been difficult for us to accept and ask for help.  We keep smiling and gritting our teeth and muddle through, changing plans, juggling childcare, dealing with situations, to see us day to day you would not know what we have to do just to be up and out and dealing with the world....

Every single night is broken, sleep does not bring rest anymore, a good night is one where Daisy only wakes about twice, a bad night is one where we are watching the clock waiting until we can draw up the next syringe of ketamine or paracetomol so that we don't overdose her.  Sometimes her stoma bag comes off or the night bag which attaches to the stoma bag at night detaches - can you imagine dragging yourself out of bed to clear up nearly half a litre of ileostomy fluid (liquid poo) from a child who has just managed to fall asleep, then change her bedding and settle her down?  Sometimes she is itching , we don't know why, and itches to the point that she pulls her hickman line dressing off and we need to re-dress it - using sterile techniques, not easy when your eyes are half closed with sleep....

So we get through the night and Andy has to go to work and appear professional and together.  I have to deal with our other three children who all need their mother, either to hunt down a missing oyster card at quarter to seven in the morning, find a missing piece of school uniform, deal with a homework ticket which they did not tell me about the night before and make sure they eat breakfast.. By this time Daisy, who was probably screaming and banging her head against the side of her cot in pain the night before is now all smiles and happy, I have to clean her TPN trolley and prepare everything for disconnection, draw up her meds for the day, disconnect her night bag and empty it and wash it out as I am not allowed to have a new night bag for every day for budget reasons...

I make up her milk to the recipe the dietitian has given, nothing is standard with Daisy so I can't get the pre-made bottles of milk other chidlren get.  I curse myself each morning that I didn't make up the milk the night before....I run the milk through her enteral milk pump and give her the morning meds and while the TPN is winding down I throw myself in the shower while shouting to Jules to make sure he has his school bag ready.

I draw up the line locks we use to prevent hickman line infections and then I disconnect her TPN and lock the line.  I dress Daisy in her school uniform, she can't do this for herself, put her leg splints on or if I am feeling lazy just her special boots with the retaining straps....she should wear the splints in order to delay the need for more leg surgery but they hurt her and sometimes there is just not enough time to get them on her.  All the time I am looking out of the window praying the school bus won't be early so that I can do battle with her hair.  It may seem a facile thing to worry about Daisy's hair with all the other things going on, one of the way Daisy's gene mutation and early failure to thrive have affected her is that she has very sparse, coarse, brittle hair, it knots easily and if it is not brushed and oiled daily forms into dreadlocks.  So this is the part of the morning where I am not being a nurse, I am being a mum, brushing her hair, putting ribbons into it, anything to make it look tidy so that she is like any other 6 year old school girl, and also avoiding the need for me to cut great matted chunks out of it...

At 8am I emerge from Daisy's room and carry her downstairs.  We have to lift and carry Daisy up and down the stairs all the time, always with one of her pumps connected.  We have been doing battle with Social Services Occupational Therapy for the past 18 months to get a solution to how to get Daisy up and down stairs, at least we have moved on from the early days of our battle when they sent a man around to fix a bannister to the wall having never even met or assessed our child, needless to say he was sent packing.  Today we were told we will hopefully get a stairlift to move her up and downstairs, however we will have to wait a while until new budgets are agreed later this year.  I just hope that my back holds out between now and then and that I don't fall downstairs while carrying her......

I put Daisy into her special needs buggy, scribble an update in her home school diary (should have done that the night before too) and then help wheel her onto the school bus.  I slurp down a cup of tea (often made but one of my children, they are well trained!) and then Jules and I leave for school.

Very rarely (infact I can only remember 2 occasions) I have gone back to bed for a sleep after the school run, there is always so much to do once the children have gone to school, starting normally with restoring Daisy's room back to a fit state to connect TPN later in the day.  The new bag of TPN has to come out of the fridge and the bedding needs to be washed, some days there will be three loads of Daisy's bedding to wash - and I make the bed up in several layers so that I can peel layers off at night to save time!

Every Monday we get a delivery of TPN and ancilliaries, I need to order stoma supplies, enteral feeds and supplies get delivered, repeat prescriptions of meds, .  I wish our PCT would just deliver full boxes of enteral syringes to us like friends who live in other areas.  Instead we have to contact the homecare nurses when we need new syringes and they will leave a bag in the reception of outpatients if they are not passing our way in the next few days.  I am then expected to reuse these syringes several times in order to save money, so more washing out and sterilising to add to my daily list....

The appointments are endless....eye hospital, audiology, orthopaedics, speech and language, local consultant, gastro consultant, cardiology, TPN consultant, ultrasounds, ecgs......  Thank goodness she is now in school and the physio can go and see her.  The phone calls never end and the paper work is out of hand...forms for everything.  Every year we have to reapply for school transport even though her needs will never change.  The Disability Living Allowance form is probably the most soul destroying thing I have to do, and up until last year I was having to fill it in annually even though Daisy's condition will never ever get better....It takes days to fill in the form and it is a depression inducing exeercise to describe on page after page the worst and most negative aspects of your child's life when all you want to do is be positive.  But you can never be positive when filling in a DLA form, one positive sentence in error, one hopeful comment and you could have your allowance stopped while they investigate.  Like my poor friend whose daughter spends her night on oxygen and is regularly in and of hospital, on a really good day she may be able to manage the walk to school (but not back again), this was interpreted as "can walk to school" and her DLA was stopped, including her entitlement to a mobility vehicle while it was investigated, needless to say at appeal it was reinstated and back dated, but at what cost to the poor family who struggled in the interim.

Some days I just don't want to face all the admin and rubbish at home so I go out for a long walk or meet with friends and just for a few hours I become the person I should be.  I'm not Daisy's mum or parent of disabled child trying to negotiate the system, I'm me, trying to have a life.... We have to have such broad shoulders becuase inevitably while our partners are at work we are the ones dealing with the officials and bureaucracy to make sure that our child gets the childhood they deserve.  We are not trying to ask for more than we should, just a chance of a level playing field for our children and they need so much more than a typical child.  And for me? I've stopped dreaming of going back to work, it's just no longer possible but how nice would it be to go somewhere where I wasn't Daisy's mum and having to use medical speak all the time... I would like an indoor wheelchair for Daisy so that she can participate in family life, so that her siblings don't have to lift her and so that she is not confined to her bed once her TPN is on, the problem is these chairs cost around £2,000 (nothing is cheap when it has the label special needs) and no-one can agree whose budget this should come out of, so while the grown ups are arguing we are left struggling or resorting to using the outside wheelchair inside the home..

I am very lucky in that Daisy has a fantastic key worker who has known us since she first came out of the neonatal unit.  She has been our advocate and ally over the years and has fought to get Daisy a package of support, this has taken a long long time and now I'm informed that we have the biggest support package in the borough, and this is what it is - 2 funded nights a month at our hospice ( it went up to 2 nights in November and is only until the end of March when it will go to panel) and direct payments to enable us to buy in care.  Bearing in mind we live in the most expensive city in the UK this money does not stretch as far as it would in other areas.  However I am able to pay for an after school nanny (plus her tax & insurance) to come to the house from 3pm until 6pm, about twice a month a very good nurse friend comes to the house to babysit so that we can either take the other children out to do things we can't do with Daisy like go to the cinema, or go out ourselves.  We are lucky, it is a very good package, but actually it's not respite, when the nanny comes to the house her job is to do the job I can't do because within 30 minutes of Daisy arriving home I have to put her TPN on, so she is talking to the children about their day or cooking their dinner while I am upstairs getting Daisy ready for the evening.  She spends around 16hours a day connected to the TPN pump (when she is not on this she is on her enteral pump) so then she is limited to being in her buggy or cot. It is great to have another pair of hands to help even though she cannot do anything medical for Daisy but as Andy is in work and I have no family within 300 miles it is the next best thing.

Evenings are spent running up and downstairs to Daisy, adminstering meds and hoping she will sleep, which of course really doesn't happen...both Andy and I have fallen into a habit of staying up late, mainly because there is no way we can actually have an early night.  We live for the nights when Daisy can go to the hospice, it is the only proper respite, I love my daughter desparately and will do anything for her but the only way I can get a break and recharge my batteries is when she is not in the house.  We are so lucky to have Chase and to have such a long relationship with them, Daisy has been going there since she was only a few months old so it very much is like a second home.  We had to fight and fight for social services to pay for funded, guaranteed nights at Chase Hospice.  We had to prove there was no-where and no-one else who could manage her care and needs, Daisy has had her condition all of her life but it took until she was 6 years old for us to get 2 funded nights a month where we get time off from looking after Daisy. And this is where I can understand the mother who was considering putting her child into care, I doubt highly that she would have acutally done it but she probably woke up one day after night after sleepless night and thought, I've had enough of being trodden all over by faceless nameless people in committees and teams and panels who are playing God with me and my child's future.  If social services were to look after Daisy full time it would cost them thousands and thousands more pounds than they currently pay to have me stay at home to look after her.  However I am never party to any of the conversations or reviews or discussions, I never have the chance to present my child's case or represent her needs, I have to rely on others to do this.

My sense is that things are getting harder for us parents of disabled children, budgets are being stretched, care packages are being scrutinised, time delays are increasing all in the name of spending reviews and cost savings and all while our children are being denied the childhood they deserve.  I had hoped that our Prime Minister would understand, he has walked in our shoes, he said so during his election campaign, he specifically singled out the cause of unpaid carers during one of his TV debates....I guess we can just live in hope that he will remember his promises.

Sorry if you thought I had disappeared for a while - it really is so difficult to find the time to sit down and put my thoughts down, I find myself relying on quick facebook updates to stave off the inevitable texts which arrive when I have not been in touch for a while...so, where were we - December....

Daisy has continued to have problems with her repaired hickman line, sometimes itching so much she pulls the dressing off, this is not a good thing.  A couple of times it has looked very red and infected but cultures have been coming back normal, and bloods are OK apart from Daisy's ongoing problem with chronic anaemia, despite nightly intravenous iron. The hickman line is Daisy's lifeline, without this access she cannot get TPN and would not be able to live so I am worried that things are not right with it - you get to know your child's line after a while and this one does not feel right....Daisy is having a Lineogram at GOS next week to see if there is a tiny tear under the skin which is causing the irritation.  It's a difficult one, I hate have having to depend on a line which already has a repair but at the same time a new line would further limit her line access options as we cannot use previously used sites of which there are many, and as we all know Daisy is not good with anaesthetic and line insertions (an interventional radiologist told me once that her veins are very wiggly, imagine that, all those years of medical training for a diagnosis of wiggly veins).

Line worries aside the main thing we continue to be concerned about is Daisy's pain, we had to up her pain medication over Christmas and use buccal ketamine about 5 nights out of seven. We all live with Daisy's pain on a daily basis - in fact during the day she only occassionally experiences pain, night time is another matter and she becomes a different child to the one everyone knows.  Our other children rarely have friends over for sleepovers and we only ever invite "understanding" friends and family over to stay because often the household is woken up by her screaming.  We continue to wait on a date from GOS for a manomentry and other tests to see if the high output from Daisy's small bowel can be managed, I have my doubts....when we do eventually go back in , Andy and I will ask for a second opionion referral to Birmingham Children's Hospital where they have made a lot of progress with children with intestinal failure. We have been told that transplant is not an option, for various reasons, from the risks posed by her Costello Syndrome to the concerns that the pain may remain despite a new gut, but for Daisy's sake we have to leave no stone unturned.  In the remote possibility that Birmingham thinks that transplant may help, Andy and I are not sure that we would even put Daisy through that, but we need to at least have explored all options even if it does confirm once and for all that the only option is life on TPN.

Another option we do want to explore is the possibility of removing Daisy's colon entirely.  The biopsies have shown that it will never work properly and is the likely culprit of the pain she experiences, even though it is defunctioned it still gives her grief with daily mucous and bloody discharge from her bottom - again the worry is, what if this does not help, it's a big surgery to put her through but hopefully one with less long term risks.  Of course all of these conversations depend on us getting back into GOS for our inpatient stay or at least moving Daisy's outpatient appointment forward.  However over the years I have learned not to burn any bridges and to be patient,  Daisy's gastro consultant is the best in his field and he has always done the right thing for Daisy so I will try and be patient while we wait for the call....

Of course since my last post we have celebrated Daisy's 6th Birthday, Christmas and New Year - all of which have been significant dates in life with Daisy to date - this year was probably the best yet - no hospital, she was well and there was even snow!  Daisy loved the snow, especially sledging on the common opposite our house with her big brothers and sister, however it did put paid to our plans to have a proper birthday party for her as everyone was snowed in.  In the end we had an impromtu party with local friends and Daisy's wonderful carer managed to get to the house (probably because she is swedish and not phased by a bit of snow) and did a magic show for the children.

Daisy loved Christmas, especially all her Singing Hands dvds and her ELC Happyland Village.  Daisy knows Singing Hands from many months spent in GOS and now appears in one of their DVDs, we bumped into them while visiting Chase just before Christmas and Daisy was beside herself with excitement.  Singing Hands are probably the main way Andy and I have learned Makaton, Daisy's signing system so we were pleased they have produced a Christmas DVD so we can sign along to I'm dreaming of a White Christmas,....

The start of this year feels more optimistic than previous years - in a way it shouldn't, Daisy's gastro problems are the worst they have ever been, her TPN requirements keep going up and her stoma output remains at an average of a litre, her pain meds are being increased regularly, but cognitively she is coming on in leaps and bounds, she vocalises more and more, shouting for her brothers to come and put DVDs on, or demanding help with games, she is growing up in so many ways and shows us daily how capable she is.  In many ways we now know what is happening with her gut, TPN is forever and the stoma is permanent, we can live with that now.  Tomorrow the palliative consultant is coming to visit to adjust the pain meds and add a new one in, hopefully we will get some answers from the gastro consultant soon about colectomy surgery and second opinion referrals, so more than ever before there is a plan and we know what is happening.

My daily battles still continue trying to get support, equipment and respite help - it is these things that wear you down,  I know what Daisy and the family needs but sometimes we have to jump through so many hoops to get to that point, and I also think that living where we do doesn't help, there is a postcode lottery element to support for children with disabilities.  And beyond these battles we have more mundane issues like the leaking sewer pipes underneath our kitchen floor....at the moment we have no kitchen, all of Christmas was spent with us burning scented candles to hide the smell, hopefully the work will be finished by the end of January and we will have a shiny new kitchen and floor and no more broken sewer pipes...hopefully my sanity will be intact as I fill kettles in the bathroom and washup in the bath....Daisy is oblivious to the chaos of our lives, school is the most important thing in her life, followed by Singing Hands and then her siblings who are at her constant beck and call....she is surounded by love and happiness and that is why, whatever it brings, 2011 will be good for us...

A beautiful gift of family time

Six years ago this week I was admitted to hospital for steroids to strengthen Daisy's lungs in preparation for her early arrival.  Up until that point we were a family of five, Theo was 7, Xanthe 5 and Jules 2 and we did normal family things - went on holiday, got babysitters in, did usual Saturday activities, ballet classes, football - all that changed at Daisy's arrival on 22nd December.  She was born by caesarean section, my first, (she was supposed to have been a home birth like her brother before her!) and our first Christmas as a family of six was spent with me recovering in hospital, Daisy in intensive care and Andy trying to keep the children's spirits up at home.

Much as our family feels so complete with Daisy, life has never been the same since her birth.  In many ways we have changed for the better, we don't sweat the small stuff and have become incredibly adaptable.  At the same time however we constantly change plans - trips and holidays get cancelled at the last minute, birthdays are celebrated in hospital rooms, the children miss out on treats and during long hospital stretches the family is torn apart and they rarely get their parents in the same room at the same time...

So the trip to Florida was so important in so many ways - mainly because it was a big opportunity to give the whole family a time out, an opportunity to be a family and most importantly to have some fun!

And, boy did we have fun!!!  We started off our adventure at the Gatwick Hilton where we met the other families and Caudwell Staff, Volunteers and Medics joining us on the trip - bless her, Daisy thought that was Disneyland - she was beside herself with excitement.

The flight was not too bad considering Daisy had her TPN running and needed her stoma bag emptying every hour -

We stayed at the Give Kids the World Village. A wonderful place where life limited and terminally ill children can enjoy a week away in the Florida sunshine.  Our villa was like something out of a storybook, but for me the best thing was that everything was all on one level, no stairs, no lifting - fantastic.

Since Daisy arrived nothing suprises us anymore, so we should have predicted that we would meet someone we knew while we were away.  On our first morning at the Village a family came into breakfast with a little girl who was Daisy's double, there was no doubt she had Costello Syndrome (the hands are a big giveaway), amazingly Cintia Cuperman, Valentina's mum, and I have corresponded online.  They were leaving as we arrived but not before we took some pics of the two girls together in their Minnie Mouse ears.

While in Florida we visited Disney's Animal Kingdom, The Magic Kingdom, Hollywood Studios, Universal Studios and Seaworld - the whole experience was truly out of this world.  As a family we had never ever done anything remotely like this, the nearest was a couple of trips to Legoland, so we just embraced the magic and suspended reality!  Andy and Theo enjoyed the rides, Xanthe enjoyed the shops, Daisy loved meeting all the characters and getting their autographs and Jules just loved everything.  There were so many highlights, shows, parades, fireworks, characters, rides, experiences....words just can't describe how fantastic the holiday was.  We all laughed so much and had so much fun, we also realised how little time we had spent together as a family unit over the past two years especially and it made us determined to try and make sure we get more time out together.

Not only did we have the whole theme park experience, staying at the Give Kids the World Village was an experience in itself - icecream for breakfast, the wish fairy visiting our villa each day, the playground opposite the villa, the train that Daisy got to drive and the most special thing, Daisy's star being added to the stars placed by thousands of other children in the Castle of Miracles.....a little piece of Daisy will always be in Florida now.

This whole trip was down to the wonderful, wonderful people at the Caudwell Children's Charity.  On our journey with Daisy we have met some very special people and the Caudwell team are right there at the top - we know Daisy is a complicated child and without Caudwell there is no way we could have made the trip as a family from a practical, financial or medical aspect, but not only did they bring Daisy out to Florida, 22 families were on the trip, all with highly complex medical needs - nearly half of the children were in power chairs, some had ventilators, Caudwell does not shy away from making sure that the most complex children get to experience the magic of Florida.  Sadly one young lad passed away while on the trip bringing home to all of us parents how fine a line we tread and how lucky we were to have made it this far...

It has been a few weeks now since we have been home and I still feel I have Florida sun for energy, I needed it last week when Daisy's hickman line broke and she had an odd allergic reaction to her TPN calling for a Saturday night sprint to A&E and a few days in hospital.

All around the house are reminders of our trip - Micky Mouse toys, photos, souvenirs .....the magic of that experience has got under our skin and changed our family.  We have beautiful photos where all four of our children have smiling happy faces, at long last we have photos with all six of us in.  Give Kids the World even arranged for Santa to visit while we were there......but the best thing - we got to meet Mickey and Minnie!

 I can honestly say my batteries are now back to full charge - the Caudwell Charity gave us the most wonderful gift this year, the chance to be a family again, we are so grateful to them .

Trying to look on the bright side

Well we lasted six whole weeks out of hospital, and I guess all good things come to an end as by week six Daisy was spiking temperatures and clearly unwell so back we went to A&E and we revisited the whole rigmarole of fluid boluses, IV antibiotics and juggling.....I had hoped to take the older 3 children to France for half term while Daisy stayed at Chase hospice, another plan shelved for another time....This admission was for another infection, caused by the bacterial overgrowth in her gut, this time however the bugs have become resistant to one of our usual antibiotics, Gentamicin, inevitable really but now limiting our options further.  The other problem was that Daisy's stoma was pouring out fluid and so she was becoming more and more dehydrated.    Her TPN has been increased even further and she regularly receives extra IV fluids ontop of this to make up for the losses from her ileostomy which are draining too much sodium and potassium from her.  Having hated maths at school I frequently find myself having to calculate fluid balances and top up fluids to replace losses..

Our consultant and Great Ormond Street has decided that Daisy needs to come in for another stay - he feels that Daisy's high stoma output is caused by it being in overdrive, like a driver with their foot on the accelerator, conversely the pain and discomfort she feels from her defunctioned colon is because it does not move at all, like the handbrake is on.  He wants to assess if the small bowel is permanently in overdrive in which case there may be a drug based solution to help or whether this pattern varies between too fast and too slow, in which case there is not a lot that can be done.  We asked if this stay could be put off until the new year , there is too much happening in our lives between now and Christmas and we want to enjoy family time away from hospital.  The main event being our trip to Disneyworld, Florida...

As I type I am surrounded by cases, lists and a milllion and one other "essential" things we need to take.  We leave later this afternoon to stay at the Gatwick Hilton where we will meet the other families going on the trip and most importantly, the medical team.  I have a spreadsheet of TPN connection and disconnection times taking into account time differences and Daisy's increased fluid needs, we have lists and letters coming out of our ears to help us pass through customs.  Tomorrow morning we will meet our TPN delivery driver at the terminal and he will hand over all the TPN we need for the holiday, plus extra bags of fluid, ancilliaries and all the medical stuff we will need just in case....needless to say our personal packing has been kept to a minimum (which is fine because we'll have plenty of space on our return journey for all the souvenirs we anticipate bringing back).

When the chance to go on this holiday was first offered to us, my instinct was to think that there were more deserving cases than ours, sicker children...but looking at our lives I forget how much Daisy and her siblings have gone through not just since she has been born (and for the weeks when I was hospitalised before she even arrived) but particularly in the last two years...she has intestinal failure, is TPN dependent, has a high output stoma regularly requiring extra fluids, because of all the issues and risks associated with her costello syndrome (malignancy, heart problems) she is not a candidate for a transplant of small bowel...this is the end of the road as far as any treatment goes, it's all about management of symptoms.  And the older children, two long school holidays in a row spent in hospital, every half term in the past two years, holidays, birthdays...so many times we have had to change plans - they really deserve this fantastic chance to have time together as a family having fun...

watch this space for photos!!!!!

(PS - the house will be occupied in our absence by the way!)

We have reached a big milestone...I was so busy getting on with life I didn't even notice that this is the longest we have spent out of hospital since 2008, our average prior to this being 21 days between stays.  Much of this is down to the fact that Andy and I now can do so much of Daisy's care.  Situations that would have ended up in an admission now are managed at home.....how far we have travelled that administering IV fluids, taking bloods, changing ileostomy bags are now part of our daily routine.

This life is so normal for us - each morning I spend an hour in Daisy's room,disconnecting TPN, changing bags, taking bloods all the time checking out of the window to see if the school bus has arrived.  Sometimes it arrives early and throws me, sometimes when it is late I get a chance to gulp back a coffee before taking Jules to school. The capacity of the human spirit is amazing, only very occasionally I step back and look at my life.  There was a time when we were first out of hospital post-ileostomy when I thought, how can I keep this pace up?  But I do, and the days go on and before we know it we create a normality out of this madness.

I never cease to be inspired by the other parents I meet along the way, parents who like us swing between hospital and home and try to make a normality out of this world.  This week was sad, two mothers I had come to know over the years lost their children. One had spent years fighting the cancer that can often come with Costello Syndrome, the other saw her child slowly and painfully decline with Huntingdons Disease, but when I think of these mothers I don't think of their struggles, I think of how they embraced every moment they had with their child and how those children packed a lifetime into their short lives.  This is what we are trying to do, not mull over the whys and wherefores but just get on with life and pack as much as possible into the time with have with Daisy.  So, in November the Nimmo Family will be travelling courtesy of a wonderful charity to Disneyland - we are going to have fun and live life to the full and create some fabulous family memories and not worry about the future, that's for another day......

In loving memory of Micah and Brodie
(and Craig, Bret, Willa, Zachary and all the children who have left this world too soon - RIP)

Gosh, it has been so long since I have posted, and as always as a family we have adapted and changed to accomodate Daisy's ever changing needs.  As I sit here now, Daisy is on a lot more TPN than previously, with her infusions running from 5pm, not long after she is dropped home by the school bus, through to 8am when she is disconnected in time to go onto the bus.  She continues to pour around a litre of fluid out of her ileostomy over a 24 hour period and we continue to connect a catheter bag to her ileostomy bag overnight to prevent the output breaking down her skin.  We continue to battle with haemoglobin levels and seem to constantly teeter between needing a transfusion and her hb bouncing back up again....life has become even more complicated but after a few weeks at home now we find ourselves adapting to our new routine like it has always been like this!!

Daisy came out of hospital at the begining of September, around 2 months after she was first admitted for surgery - as always her stay was not without complications including a dose of parainfluenza!  She also developed a rare side effect of ileostomy surgery, diversion colitis, where the remaining segment of colon which has been defunctioned became inflammed causing her to bleed from her bottom.  The treatment for this was twice daily Short Chain Fatty Acid enemas, which were both difficult and distressing to give.  The enemas were stopped but unfortunately since coming home Daisy has had a recurrence of this and we are awaiting an outpatients appointment at GOS. It is possible that Daisy may face further surgery next year to remove her colon as it is still causing her a lot of pain and distress and we are now having to give her maximum doses of gabapentin as well as oral ketamine at night to help manage this.

Our saving grace has been the palliative care team, both at GOS and at our hospice Chase - they can't cure Daisy, she is incurable, but they can manage her symptoms and her pain so that the time she has with us is comfortable.  We are so lucky to live where we do, there are very few paediatric palliative care teams in the country and we have access to the best.  Our joint mission is to maximise Daisy's quality of life and alleviate her pain. Sadly, the pain which we hoped the ileostomy would alleviate is still very much there but with the help of our team we have access to the best expertise possible to make it better.

Daisy started back at school as soon as term started, as always this is the most important thing in her life, so it was important to get her back as soon as possible.  Her new one to one support assistant started and has instantly fallen in love with her - who wouldn't!  It was nice for me to discover that she knows many of the mums in our area too.  Daisy is now in year 1 and is in a group following a very specialist curriculum being pioneered in the school to maximise potential in children with multi-sensory disabilities.  She is already more and more vocal and proves to us day in day out how cognitively able she is.

At the beginning of September was a UK meeting for Costello Syndrome run by the UK branch of the charity which supports children with this syndrom.  Our good friends, the Deckman Family, who have a teenage son Collin with CS came over for the conference and it was great to catch up with them for a day at our house.  Our children have met Collin before so it was a great reunion for them all playing together.  We attended one day of the conference with Daisy and met up with other families we had only met online and well as our friends the Stickley and their children including their daughter Rebecca who is 6 months older than Daisy.  We spoke with some of the geneticists and researchers who attended the conference and shared Daisy's biopsy results and they confirmed what we had always suspected - Daisy is completely and utterly unique.  The problems in her gut have not been seen before in our group of children, they do not know why she has these problems and why she has so much pain.  We know believe that without Costello Syndrome it seems likely that Daisy would have had intestinal failure - she has been hit with a double whammy and it serves to make us all the more isolated as we do not belong fully in either world.  Daisy shares a gene mutation with the other children with Costello Syndrome but no one else has TPN and ileostomies to contend with.  These things Daisy shares with other Gastro families we know, but none of them deal with the other Costello things like the cancer risk, heart problems, growth hormone deficiency, visual impairment and orthopaedic issues like we do.

A week into the new term, Daisy had a respite stay at our wonderful hospice, Chase, in Guildford.  As her needs have changed so much I stayed with her for the first 24 hours and Andy also spent a night there, we did have a couple of nights when we were home alone.  This really allowed us all to rest and recharge our batteries knowing that Daisy was completely and utterly happy in Chase.  She is going back in again for the October half term and we are planning to take the other three children to France, where they are going to practise their french!

Since being back home from hospital I have continued on my mission to declutter the house and get to grips with the paperwork.  Many people just do not realise how much paperwork comes with the territory when you have a disabled and medically fragile child - forms for this, applications for that, appointments, letters, info - all of it has to be kept, filled in, dealt with, it's a full time job the cupboard where I have been cramming the paperwork is now officially full so I really have to deal with it!  Ontop of that we now have four children in four different schools in four London boroughs all generating their own masses of letters, emails and texts - it's really overwhelming.

My life is a full time managment job, I definitely did not work as hard as this when I was working full time, even though I had three children at the time.  Hence the long time taken to update this blog - every day is full on and Daisy's latest problems mean that an already full workload is now even fuller -  I am counting the days till the next respite break at Chase just so someone else can take over for a while and Andy and I can get a break.  Roll on October!

Gut Instincts

Three weeks ago today Daisy had her ileostomy surgery and as we all know, three weeks is a long time in our world……


The surgery itself went according to plan, the anaesthetist spent over 90minutes going through everything about Daisy, checking her recent echocardiograms and preparing a plan for her pain management post surgery. Daisy, like many children with Costello Syndrome is not great with anaesthetic and this is where Great Ormond Street Hospital comes into it’s own. She was in theatre for about 3 ½ hours but spent longer than usual in recovery mainly because she developed an allergic reaction to one of the anaesthetic drugs and her face and lips were swelling up. She came back to the ward on morphine and ketamine in a pump and stayed on this for over a week.

Immediately post surgery the stoma prolapsed which means that the intestine was pushing out further than it should. So having looked a pictures of stomas on the internet to ready myself my first sight of Daisy’s stoma was not quite what I anticipated, infact it looked like a six inch sausage of intestine hanging off her abdomen.

Another trip to theatre loomed but fortunately the prolapse corrected itself and now at least I know the difference between a prolapsed stoma and a normal one. I also had not anticipated that Daisy would have a large scar from her navel to her pubic bone where the surgeons had opened her up to take out a piece of her colon. This scar infected and we have had a three week battle getting it to heal, not a great task when you consider how close it is to a stoma which is pouring out bowel contents…Being immunosuppressed slows the healing time and this has meant that the infection in the surgical site has been very slow to heal.

After a week we were told the results of the biopsies that the surgeons had taken. Dr Lindley our Gastroenterologist is a leader in his field of motility disorders and neuropathic bowel disease, however he has never seen a disorder of the nerves like those in daisy’s colon. His words were that we should have done the ileostomy a year ago and it was the best thing that we could have done. It has been bittersweet having the proof that Daisy’s colon is not formed properly and has never worked, she was born this way and all along Andy and I have said that we did not feel that she would grow out of her gut problems, our instincts have been proven right. It also confirms that she has been experiencing severe pain in her gut and we are so grateful to be under the Symptom Care team, working with them to manage Daisy’s pain. The problem now is that the ileostomy is permanent, the hope that by resting the colon it would get better and the ileostomy could be reversed has gone. Daisy’s colon will never work, we still don’t know whether it is part of her Costello syndrome that has never been seen in another child with the syndrome or whether it is something she was going to have regardless of her syndrome, the important thing now is that the ileostomy has to work – and this is now our biggest battle.

Normally an ileostomy output (of poo basically!) should be around half a litre – at the moment Daisy’s ileostomy is pouring out double and some times three times this amount and it is just watery in content (sorry but Andy and I are now becoming experts on stoma bag contents and this is our daily conversation, we’re immune to the grossness of it!!!). Daisy is still on 24 hours a day TPN and we have started a tiny bit of milk – the equivalent of 1 tsp an hour – this just pours out of the stoma looking the same as when it went in!

The doctors initially started treatment for bacterial overgrowth and have found some bacteria in her small bowel (the only bit that is left and working) that would normally only be found in her colon, however they are still scratching their heads as to why Daisy is losing so much fluid, their strategy is to wait and see and hope. Losing more fluid than goes in also makes her dehydrated very quickly and lose essential electrolytes so she has to have daily intravenous fluid top ups ontop of her TPN. Add into this the intravenous pain medication she needs daily and that means that there are four pumps she is attached to at any one time.

Because her stoma losses are so watery they were leaking from the stoma bag and reinfecting the infected surgical scar, so the wonderful stoma nurses have come up with a solution involving a urostomy bag (normally used for draining wee) hooked up to a urinary catheter – so ontop of the pumps she has a big catheter bag we have to manage. This means we are pretty much confined to her cubicle all day and all of us are slowly going slightly mad…..

Of course it is the school holidays now. Thankfully we anticipated a long hospital stay so some plans are in place for the children, most of which involve Andy or I picking up or dropping off a child on a weekend. While Daisy’s stoma refuses to work properly or absorb any feed then we are here pretty much for the long term.  We also need to be here at the moment to get her pain management regimen fine tuned – now she is on maximum gabapentin for her age, daily IV paracetomol and ketamine when she needs it. We have not seen the hoped for improvement in Daisy’s pain at night, infact if anything she needs more medication than before but at least we have a co-ordinated plan driven by our symptom care (palliative team) from both this hospital and Chase Hospice.

Family life has still gone on over the past three weeks. Xanthe said goodbye to St John Fisher School, the second of my children to progress to high school.  I vividly remember the day I took her to nursery, all pigtails and smiles and now she is growing up into a beautiful girl, with her fair share of pre-teen hormones!  She amazed us in her school production of A Midsummer Night's Dream where she wowed the audience with her performance as Bottom, clearly she has the Nimmo acting genes.  The children are all visibly more relaxed now school has finished and the holidays have begun, even if once again they are spent in different locations it is nice for them not to have the added pressure of early mornings and homeword deadlines to contend with.  I hope I will get a chance before the end of summer to do the dreaded new school shoes shopping run and get the last bits of high school uniform for Xanthe before she starts the next chapter of her life as a St Philomena's Girl.

Daisy had a brilliant report from Linden Lodge and will be progressing to Year 1 when (emphasis on when) she returns in September, she also had a great report for her piano playing, and has suprised us all with her musical ability!

So we muddle through again, and make the best of things, I am so grateful that at the outset of our journey with Daisy Andy and I had a strong marriage as we have been tested time and time over, our children are growing into lovely, intelligent , self sufficient young people and at the tender age of 7 even Jules can made a cup of tea for his mummy!
We will just have to wait and go at Daisy's pace and hope the ileostomy begins to behave and function as it should. In some children, without the complications Daisy has a small bowel transplant can be an option to get a child off TPN however, while this has not 100% been ruled out it is highly unlikely that she will be accepted for transplant or do well with the surgery so TPN and an ileostomy is our only option. With gastro children there are often no magic fixes, what works with one child does not work with another – the mantra is always the same, one day at a time, we just have to wait and see if this ileostomy decides to work and hope it makes the difference we are looking for….

Well it turned out that a weekend in Glastonbury was just what I needed to recharge my batteries and prepare for Daisy's impending surgery.  I had spent the best part of a year trying not to look forward to it incase it didn't happen so couldn't actually believe it when I did get there.  There is certainly something magical about that part of Somerset and it worked it's spell on me, I left my watch at home, switched my mobile off and moved to Glastonbury time.  Those in the know, know that Glasto is more than just the headline bands and my best memories are just of chilling listening to some amazing music and eating some lovely food (and partaking in one or two somerset ciders!).  We were blessed with the weather and the extra money I paid to camp in a location with decent loos and showers reaped dividends.  All in all it was a wonderful opportunity to just pull myself together again, relax and unwind.  I got to spend some precious mum and daughter time with Xanthe too which was a real bonus.  I just can't wait to go to Glasto again next year, it's cast a spell on me... (and I can't wait to thank the nurse on Rainforest ward who told me over a year ago that I should apply for tickets as I would love it).

So since Glastonbury my time has been filled getting ready for Daisy's impending ileostomy surgery...sorting out a complex childcare spreadsheet for the summer has been the main challenge.  It is not easy making sure that children of different ages and different genders all get to have a fun time while their parents are either in hospital or working.  I have evolved my plans on the assumption that nothing will go according to plan and Daisy will do another long term stay, it does seem to involve Andy or I spending a lot of time driving down motorways dropping various offspring at various relatives/holiday camps at different times in the summer  - just hope they appreciate how much planning has gone into them having fun!

I have also been getting everything ready for Xanthe's big transition to High School.  When Theo went up to his high school little did we know that a few weeks in Daisy would go into hospital and not come out again nearly 12 months later.  This time I want to be better prepared as it really impacted him.  Now instead of after school clubs we have a lovely after school carer who comes to the house and can turn her hand to looking after Daisy or one of the other children if needed. I have also made sure that Xanthe's new school is aware of the situation so that if things get stressful at home they are aware of it.  Having a child like Daisy has a ripple effect on the entire family, we plod along then suddenly something happens like a tube being pulled out, a line infection, a UTI and lives get turned upside down,  We all become used to this rollercoaster but over the years I have realised that we have to put some safety nets in place and not assume that we will all be able to ride the storm.

I have a realisation today also that when you have a child with a complex medical disability you become disabled as a parent/carer - or differently abled.  I have to create a new persona and take away a bit of me in order to operate in this world of disability.  I am now Daisy's mum, or just "mum" as the doctors and nurses call me (not all of them, but enough for it to jar).  I have to be nice to people in order to get things for my daughter, I have to deal with people who I don't necessarily like, I have to be diplomatic and swallow my tongue, I have to know my place.  The other day our community nurse dropped around some medicine syringes for Daisy, it was only that evening when I was drawing them all up I discovered that one of the syringes she had dropped off was the wrong type to connect to Daisy's jej tube.  I was planning to visit a friend who was in our local hospital with her daughter that day so drove up and asked a nurse if I could have some syringes - two were produced together with a telling off that I shouldn't get them from the ward but should be getting them from the community nurses.  It was only afterwards when I mulled over this I realised the situation I was in, here I was a highly educated woman who had once had a successful career, now trained to care for an TPN dependent, medically complex child, having to beg for syringes and being told off for asking the wrong person....This is the situation many of my hospital friends find themselves in - we are expected to do so much for our child but we are so isolated - I am friends with the nurses on a superficial level but I am not a nurse, I can talk to the doctors about Daisy, but I am not a doctor, I can work with social workers, occupational therapists, speech therapists and all the multitude of people who seem to have a say in my child's life but the power is with them.  I am dis-abled because I have had to become a different person in order to get my child what she needs.  So next time, please give me the sodding syringes, in fact give me ones that fit her tube so that when at the end of the long day I am drawing up one of the 20 odd meds she needs during the day I have the equipment at hand I need to do the job I need to do.....

So now as I type it is the night before the hospital admission. Tomorrow Daisy goes back onto Rainforest.  I phoned twice today to check the bed is available and so far so good although I have not packed at this point (I am an expert hospital packer now so not too worried about doing it at short notice). Tomorrow we should be talking to the surgeons, anaesthetist and pain team in anticipation of the surgery on Friday.  Daisy's pain med which had lulled us into a false sense of security a week ago has stopped working so Andy and I know that this is the only route to go down to hopefullly alleviate the night time pain Daisy experiences.  Our wonderful palliative care team at Chase have visited and there is a plan post op so now the only thing left is for us to get to the hospital and for Daisy to have her surgery.  I hope and pray it will make a difference, I am realistic enough to know that things will probably get worse but maybe we will turn the corner over time and not regret our decision....