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!
17 December 2011
22 November 2011
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...
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...)
21 November 2011
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.
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!
13 October 2011
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 -
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.....
11 October 2011
Is respite a right or a privilege?
Into week five now and this is where things get interesting - not for the doctors or surgeons, they have done their bit, and very successfully. Now we are onto the phase of getting a regimen for Daisy that will keep her reasonably stable and minimise time at hospital. The Mitrofanoff surgery was originally intended to provide an easy route for regular catheterisation, however inserting a catheter into the stoma is proving difficult both as Daisy finds it traumatic and because of all of her previous abdominal surgery it isn't the most straightforward channel to catheterise. It has now been decided that she will have a catheter left in the stoma for a week at a time which we can drain during the day and keep on free drainage overnight, I am going to be taught to change this catheter and manage any problems that may occur with the long term plan being that we will build up changes so that eventually, several months down the line, we can catheterise Daisy intermittently and leave her tube free in between. The theory behind all this is great apart from the fact that again she is open to infection from a permanently placed catheter and also bladder pain is a big issue requiring ever increasing doses of anti-spasmodics. But what everyone agrees is that we will get there, at Daisy's pace and in Daisy's time.
And this is the issue - again Andy and I are taking on responsibility for managing yet another element of Daisy's care that is not common place in the community and we will need to be confident that anyone who is involve in her care understands. Our concern also is the courses of antibiotics she has received over the past few years as she rebounds in and out of hospital with infections and sepsis, antibiotics which she is developing increasing resistance to. Our hope is to stabilise this pattern and reduce the admissions but this needs a period of time when drugs can be tweaked and changes made to protocols so that when she does come home it is for a good period of time. But does all this need to be done in an acute hospital setting?
Our other big concern as Daisy approaches 7 is for her mental health - this is a child who has spent more than half her life in hospital, who has been subjected to countless painful and traumatic procedures, she is making it very clear what she wants and what she doesn't want, and our role as her parents is to make sure that everyone takes her opinions into account too.
What Daisy wants more than anything in the world is to be with her family, all day long she talks (we always think of Daisy talking as she communicates fluently through signing) about her brothers and sister. If an advert comes on the TV that she thinks Jules would like for Christmas she will tell me, if her Ipad doesn't work she calls for Theo, if we are choosing her clothes to wear she tells me what Xanthe likes. Daisy loves being part of the family and wants for us all to be together again,..and that is what Andy and I want more than anything else . A referral has now been made for care at The Children's Trust at Tadworth but I keep being told unofficially over and over that there is no way our PCT will fund a transitional stay at this facility, even though it will provide holistic care for Daisy and support for the family en route home. The possibility of transition via our hospice for an extended period is also not an option, they are so stretched that committing to taking a funded child for a long term child is not possible although there is a glimmer of hope that we may be able to have a short stay for a few days. The only other options are to just bring her home or to transition via our local hospital, which would give the team there a chance to get used to her latest drug/catheter/TPN/Stoma regimens - these latter two options do not really allow us much opportunity to just be parents to Daisy. Our biggest hope, and our request to our local services, when we first knew that Daisy would have this big surgery was that we would be offered the chance to have some time to catch our breath before coming home, away from an acute hospital setting with medical support so that we could remind Daisy and the other children that first and foremost we are their parents and spend time together as a family without having to worry about fully managing all of Daisy's care. Sadly my fear is that we will be so ground down by the relentless strain of never seeing eachother, trying to juggle childcare, trying to be in several places at once that we will throw in the towel and just take Daisy home and try and manage as best we can.
Over the years, as Daisy has become more and more medically complicated and the care involved more specialised is seems like the support we need to get a break from caring is being whittled away. Without support (as I always emphasise - at not cost to the taxpayer!) from our wonderful hospice Shooting Star Chase Andy and I would get no break from the constant care that Daisy needs. We do have a funded package of support provided by Social Services but it does not allow us a break from looking after Daisy (it used to but sadly as Daisy has become more complicated the support package has decreased), it merely props us up in order to care for her. We have PCT funded night nurses now - initially we were allocated 3 nights a week but following their professional feedback on the level of Daisy's care needs this was increased to 4 nights (bearing in mind we have only been able to use them for a few weeks this summer in between hospital stays!. On a night we have a nurse booked she will arrive at 10pm and I will hand over how Daisy is doing, this can take a while so I don't get to go to bed until 10.30pm, so much for having an early night. The nurse is able to administer the pain medication Daisy needs into her tube but if intravenous pain medication is required she has to wake me up, similarly if Daisy is unwell and needs to be transferred to hospital she has to wake me up and then can finish her shift early. I have to get up at 7.30am in order to have a handover on how the night went and prepare to disconnect Daisy from her TPN and get her ready for the day. When the nurse is in the house, we are not allowed to leave. Apparantly this is our respite - sorry, but I thought the opportunity to have a night's sleep every other night was a basic human right? We receive some direct payments to buy in care, but the carers cannot be left unsupervised while Daisy's TPN is running and we cannot be too far away when it is not, occassionally we save up our direct payments money and blitz it on a four hour babysit from one of the hospice nurses - I won't say how much it costs but if you consider that Daisy is classed as high dependency you can imagine the hourly rate.
So I'm thinking about my own fantasy bucket list that the people behind desks who make decisions on who should receive funding should read:-
Things I would like to do:-
Have a weekend away with my husband, without children
I'd like to take all three of the older children to the cinema/theatre with Andy rather than toss a coin on who stays at home
I'd like to go on holiday and not return more knackered than when we left - holidays are wonderful but they also mean that we get no night care at all so not only are we managing the days we are struggling with the nights
I'd love a weekend away with my girlfriends knowing I'm not leaving Andy managing four children and all of Daisy's medical care for the weekend
I'd love to go back to work part time - how can I when Daisy spends so much of her time in hospital and always will?
Reading this through I sound so negative - truly I am not. I am so grateful to have Daisy in our lives, she makes our family complete. I also know parents who have lost their children who would do anything to swap places with me. She is the funniest, feistiest, little girl I know and I will do anything for her, I am so grateful that she is still here and fighting her corner constantly- and that's the hook, at the end of the day, no matter how much crap is thrown at us, we will always do whatever it takes to keep our family together and to give all our children some sort of childhood, regardless of our problems. So we will keep struggling on, battling bureaucracy, educating ourselves on our rights by trawling through endless government white papers and charity publications on the rights of carers while knowing that they count for nothing in the real world. We can say things like; "well if we just give up then they will have to pay for Daisy's care and that will cost them a huge amount more" - but everyone knows we won't give up, we'll keep fighting, and it's a fight for all of us carers of the most medically complex, forgotten children - for an occasional night off, to be parents not carers once in a while, to be a couple, to be a family...
And this is the issue - again Andy and I are taking on responsibility for managing yet another element of Daisy's care that is not common place in the community and we will need to be confident that anyone who is involve in her care understands. Our concern also is the courses of antibiotics she has received over the past few years as she rebounds in and out of hospital with infections and sepsis, antibiotics which she is developing increasing resistance to. Our hope is to stabilise this pattern and reduce the admissions but this needs a period of time when drugs can be tweaked and changes made to protocols so that when she does come home it is for a good period of time. But does all this need to be done in an acute hospital setting?
Our other big concern as Daisy approaches 7 is for her mental health - this is a child who has spent more than half her life in hospital, who has been subjected to countless painful and traumatic procedures, she is making it very clear what she wants and what she doesn't want, and our role as her parents is to make sure that everyone takes her opinions into account too.
What Daisy wants more than anything in the world is to be with her family, all day long she talks (we always think of Daisy talking as she communicates fluently through signing) about her brothers and sister. If an advert comes on the TV that she thinks Jules would like for Christmas she will tell me, if her Ipad doesn't work she calls for Theo, if we are choosing her clothes to wear she tells me what Xanthe likes. Daisy loves being part of the family and wants for us all to be together again,..and that is what Andy and I want more than anything else . A referral has now been made for care at The Children's Trust at Tadworth but I keep being told unofficially over and over that there is no way our PCT will fund a transitional stay at this facility, even though it will provide holistic care for Daisy and support for the family en route home. The possibility of transition via our hospice for an extended period is also not an option, they are so stretched that committing to taking a funded child for a long term child is not possible although there is a glimmer of hope that we may be able to have a short stay for a few days. The only other options are to just bring her home or to transition via our local hospital, which would give the team there a chance to get used to her latest drug/catheter/TPN/Stoma regimens - these latter two options do not really allow us much opportunity to just be parents to Daisy. Our biggest hope, and our request to our local services, when we first knew that Daisy would have this big surgery was that we would be offered the chance to have some time to catch our breath before coming home, away from an acute hospital setting with medical support so that we could remind Daisy and the other children that first and foremost we are their parents and spend time together as a family without having to worry about fully managing all of Daisy's care. Sadly my fear is that we will be so ground down by the relentless strain of never seeing eachother, trying to juggle childcare, trying to be in several places at once that we will throw in the towel and just take Daisy home and try and manage as best we can.
Over the years, as Daisy has become more and more medically complicated and the care involved more specialised is seems like the support we need to get a break from caring is being whittled away. Without support (as I always emphasise - at not cost to the taxpayer!) from our wonderful hospice Shooting Star Chase Andy and I would get no break from the constant care that Daisy needs. We do have a funded package of support provided by Social Services but it does not allow us a break from looking after Daisy (it used to but sadly as Daisy has become more complicated the support package has decreased), it merely props us up in order to care for her. We have PCT funded night nurses now - initially we were allocated 3 nights a week but following their professional feedback on the level of Daisy's care needs this was increased to 4 nights (bearing in mind we have only been able to use them for a few weeks this summer in between hospital stays!. On a night we have a nurse booked she will arrive at 10pm and I will hand over how Daisy is doing, this can take a while so I don't get to go to bed until 10.30pm, so much for having an early night. The nurse is able to administer the pain medication Daisy needs into her tube but if intravenous pain medication is required she has to wake me up, similarly if Daisy is unwell and needs to be transferred to hospital she has to wake me up and then can finish her shift early. I have to get up at 7.30am in order to have a handover on how the night went and prepare to disconnect Daisy from her TPN and get her ready for the day. When the nurse is in the house, we are not allowed to leave. Apparantly this is our respite - sorry, but I thought the opportunity to have a night's sleep every other night was a basic human right? We receive some direct payments to buy in care, but the carers cannot be left unsupervised while Daisy's TPN is running and we cannot be too far away when it is not, occassionally we save up our direct payments money and blitz it on a four hour babysit from one of the hospice nurses - I won't say how much it costs but if you consider that Daisy is classed as high dependency you can imagine the hourly rate.
So I'm thinking about my own fantasy bucket list that the people behind desks who make decisions on who should receive funding should read:-
Things I would like to do:-
Have a weekend away with my husband, without children
I'd like to take all three of the older children to the cinema/theatre with Andy rather than toss a coin on who stays at home
I'd like to go on holiday and not return more knackered than when we left - holidays are wonderful but they also mean that we get no night care at all so not only are we managing the days we are struggling with the nights
I'd love a weekend away with my girlfriends knowing I'm not leaving Andy managing four children and all of Daisy's medical care for the weekend
I'd love to go back to work part time - how can I when Daisy spends so much of her time in hospital and always will?
Reading this through I sound so negative - truly I am not. I am so grateful to have Daisy in our lives, she makes our family complete. I also know parents who have lost their children who would do anything to swap places with me. She is the funniest, feistiest, little girl I know and I will do anything for her, I am so grateful that she is still here and fighting her corner constantly- and that's the hook, at the end of the day, no matter how much crap is thrown at us, we will always do whatever it takes to keep our family together and to give all our children some sort of childhood, regardless of our problems. So we will keep struggling on, battling bureaucracy, educating ourselves on our rights by trawling through endless government white papers and charity publications on the rights of carers while knowing that they count for nothing in the real world. We can say things like; "well if we just give up then they will have to pay for Daisy's care and that will cost them a huge amount more" - but everyone knows we won't give up, we'll keep fighting, and it's a fight for all of us carers of the most medically complex, forgotten children - for an occasional night off, to be parents not carers once in a while, to be a couple, to be a family...
23 September 2011
Postcode Lottery
Two weeks post surgery and this amazing girl continues to defy the odds and exceed expectations. No-one who knows Daisy well would have believed how strong and well she would look two weeks in. She is still on intravenous morphine, paracetamol and antispasmodics, but her ketamine is now going into her jejenal tube along with all her other meds, including the latest additions to her pain cockatil - oxybutinin and diazepam...
She is also nearly back up to her old enteral feeding regimen, although her TPN is still running over 24 hours . She is clearly over the acute, post surgical phase and now reality bites as we work, at Daisy's pace , to get her back to a regimen of nutrition and pain management where she is comfortable and we can manage at home. Our aim is to get her home and keep her there for as long as possible, that was why we agreed to the surgery, in the hope that it would reduce the infections, but while the medics are all very pleased at how well things have gone, Andy and I are more guarded, relieved that she got through the surgery in one piece but biding our time before we say that the surgery achieve the desired outcome.....I won't be able to say that for certain until a good few months down the line when Daisy has been home and we have a semblance of normality in our family life.
And soto thoughts of going home....we had always prepared ourselves for another long stay, preferring to put the hours in now in the hope that this will pay dividends. The next milestone in Daisy's recovery will be to remove the drains from her bladder and start to train it in preparation for catheterisation via her new Mitrofanoff stoma. We don't anticipate this will be a quick process, Daisy has been experiencing a lot of pain from her bladder and we can't imagine that she is going to be too tolerant of a plastic catheter being shoved into a newly formed bladder stoma that she currently associates with pain. However we know that slowly slowly things will get better and we will perfect our catheterisation skills in the same way that we perfected our Hickman Line & TPN skills and Ileostomy skills and all the other medical procedures we have had to learn on the way, and the mitrofanoff and bladder emptying will become another part of our lives.
Standing back from all of this we can start to see how easy it is to become swept up in the world of caring for Daisy's medical needs, we have become competent in so many areas, I wonder is this a good thing? What if something was to happen to us, would someone else know what to do??? One thing I have put in place is a "Daisy Bible" a huge file all about Daisy with her care plans, key contacts, letters, information on her communication needs, even pictures of her enjoying life at home - everything anyone would need to understand how to look after her, the nurses have told me that it is invaluable in helping them get to know her and to deal with her needs without always having to ask me. Increasingly Andy and I have been aware that we need to make sure more and more people know and understand Daisy's care needs so that we get the support we need to parent her and also so that people who look after Daisy realise that she has a say in how she wants things done and what she wants in life. Daisy is nearly 7 years old, we need to make sure that everyone understands that her opinion matters.
We have been very fortunate during this hospital stay in that there was a huge amount of planning that went on beforehand and teams involved in Daisy's care are co-ordinating and communicating better than they ever have been. We actually had a multi-disciplinary meeting yesterday to discuss Daisy and next steps now she has recovered from the acute surgical phase. I am so relieved that the team have clearly got a good understanding of Daisy's holisitic care needs, and specifically that to make her best recovery she needs to be allowed to be a little girl. They have suggested that instead of condemning both Daisy and as a result the whole family to another extended stay where we tweak TPN volumes and drug regimens Daisy goes to a setting which can manage both her medical and social needs better, this sort of setting would be somewhere like our hospice or a rehabilitation centre like the Children's Trust at Tadworth. Both options would be fantastic, they would allow Daisy to have fun while having one to one nursing care and an input from her GOS teams, the downside is that this would involve funding at Primary Care Trust (PCT) level
From our point of view how wonderful would it be for Daisy to be able to be out of hospital and transition to home safely with appropriate medical care so that when she did come home she was stable and we were able to confidently support her medical needs - we know that Daisy would want this, however great this plan sounds it comes at a cost, someone (ie the PCT) would have to pay. If they refuse to allocate the funding for this then Daisy will have to remain in hospital as we just do not have the 24 hour nursing care at home which would enable us to manage her medical needs until she is stable and the price will be Daisy missing out on precious childhood days, her parents not seeing eachother while one stays at the hospital and the other struggles to manage a career to support us and three siblings needs constantly juggled according the to day of the week and which parent can manage to be at home. There is just no consistency in care strategies and budgets in this country and while our community nurse will take Daisy's case to a panel of managers next week to consider together with letters of evidence from her Medical Team at GOSH it will come down to whether they wish to allocate funding to support Daisy's needs, some PCTs will, some wont - it's a postcode lottery and comes down to cash. So Daisy will either strike lucky and receive funding to get out of hospital and into a more holistic environment or the decision will be made that the PCT cannot afford it and, as there is no where else suitable for her to go until she is stable she will remain a guest of Great Ormond Street.
Please keep your fingers crossed that the decision goes our way and Daisy gets to do what she wants for a change.
She is also nearly back up to her old enteral feeding regimen, although her TPN is still running over 24 hours . She is clearly over the acute, post surgical phase and now reality bites as we work, at Daisy's pace , to get her back to a regimen of nutrition and pain management where she is comfortable and we can manage at home. Our aim is to get her home and keep her there for as long as possible, that was why we agreed to the surgery, in the hope that it would reduce the infections, but while the medics are all very pleased at how well things have gone, Andy and I are more guarded, relieved that she got through the surgery in one piece but biding our time before we say that the surgery achieve the desired outcome.....I won't be able to say that for certain until a good few months down the line when Daisy has been home and we have a semblance of normality in our family life.
And soto thoughts of going home....we had always prepared ourselves for another long stay, preferring to put the hours in now in the hope that this will pay dividends. The next milestone in Daisy's recovery will be to remove the drains from her bladder and start to train it in preparation for catheterisation via her new Mitrofanoff stoma. We don't anticipate this will be a quick process, Daisy has been experiencing a lot of pain from her bladder and we can't imagine that she is going to be too tolerant of a plastic catheter being shoved into a newly formed bladder stoma that she currently associates with pain. However we know that slowly slowly things will get better and we will perfect our catheterisation skills in the same way that we perfected our Hickman Line & TPN skills and Ileostomy skills and all the other medical procedures we have had to learn on the way, and the mitrofanoff and bladder emptying will become another part of our lives.
Standing back from all of this we can start to see how easy it is to become swept up in the world of caring for Daisy's medical needs, we have become competent in so many areas, I wonder is this a good thing? What if something was to happen to us, would someone else know what to do??? One thing I have put in place is a "Daisy Bible" a huge file all about Daisy with her care plans, key contacts, letters, information on her communication needs, even pictures of her enjoying life at home - everything anyone would need to understand how to look after her, the nurses have told me that it is invaluable in helping them get to know her and to deal with her needs without always having to ask me. Increasingly Andy and I have been aware that we need to make sure more and more people know and understand Daisy's care needs so that we get the support we need to parent her and also so that people who look after Daisy realise that she has a say in how she wants things done and what she wants in life. Daisy is nearly 7 years old, we need to make sure that everyone understands that her opinion matters.
We have been very fortunate during this hospital stay in that there was a huge amount of planning that went on beforehand and teams involved in Daisy's care are co-ordinating and communicating better than they ever have been. We actually had a multi-disciplinary meeting yesterday to discuss Daisy and next steps now she has recovered from the acute surgical phase. I am so relieved that the team have clearly got a good understanding of Daisy's holisitic care needs, and specifically that to make her best recovery she needs to be allowed to be a little girl. They have suggested that instead of condemning both Daisy and as a result the whole family to another extended stay where we tweak TPN volumes and drug regimens Daisy goes to a setting which can manage both her medical and social needs better, this sort of setting would be somewhere like our hospice or a rehabilitation centre like the Children's Trust at Tadworth. Both options would be fantastic, they would allow Daisy to have fun while having one to one nursing care and an input from her GOS teams, the downside is that this would involve funding at Primary Care Trust (PCT) level
From our point of view how wonderful would it be for Daisy to be able to be out of hospital and transition to home safely with appropriate medical care so that when she did come home she was stable and we were able to confidently support her medical needs - we know that Daisy would want this, however great this plan sounds it comes at a cost, someone (ie the PCT) would have to pay. If they refuse to allocate the funding for this then Daisy will have to remain in hospital as we just do not have the 24 hour nursing care at home which would enable us to manage her medical needs until she is stable and the price will be Daisy missing out on precious childhood days, her parents not seeing eachother while one stays at the hospital and the other struggles to manage a career to support us and three siblings needs constantly juggled according the to day of the week and which parent can manage to be at home. There is just no consistency in care strategies and budgets in this country and while our community nurse will take Daisy's case to a panel of managers next week to consider together with letters of evidence from her Medical Team at GOSH it will come down to whether they wish to allocate funding to support Daisy's needs, some PCTs will, some wont - it's a postcode lottery and comes down to cash. So Daisy will either strike lucky and receive funding to get out of hospital and into a more holistic environment or the decision will be made that the PCT cannot afford it and, as there is no where else suitable for her to go until she is stable she will remain a guest of Great Ormond Street.
Please keep your fingers crossed that the decision goes our way and Daisy gets to do what she wants for a change.
12 September 2011
It's a marathon, not a sprint
Today is day three post surgery and Daisy is still in a lot of pain. Her morphine and ketamine have been pushed up as last night her epidural came out and this was taking the edge of her pain.
Her bowel has still completely shut down but her mitrofanoff is working well. There is nothing going on that we did not expect or anticipate, from her need to be transfused soon to her low grade fever (as a result of bacteria being release from the colon when it was removed). So while the first big and dramatic milestone, the surgery, is over with no major dramas or suprises, the challenge will now be over the next days and weeks as hopefully Daisy's gastrointestinal system starts to work and we are able to assess the level of chronic pain she has that will need managing from an ongoing basis.
The challenge for me is to turn the gears down and move out of sprint rhythm and onto a marathon pace. It's easy to want to move forward quickly and set yourself up for disappointment, especially after the adrenaline fuelled last few days but the reality, as any parent of a child with complex gastro needs will tell you, it's two steps forward and one step back. While appearing pessimistic to some doctors who don't know Daisy and quite what she is capable of, I prefer to describe myself as realistic. I anticpate that things will go wrong, multiple spanners will be thrown into the works on our journey to get Daisy back home, and if things happen sooner than I anticipated then that's a bonus!
We are on a different ward to our usual Rainforest and under the Surgery and Urology teams, I'm letting them get to know me so that I don't come across as a pushy mother. It's so difficult when your child is so incredibly complex and your main role is to know all about her to reign it in a bit while the professionals do their job! However I (and of course Andy who is a complete hands on dad too!) am first and foremost Daisy's advocate, making sure that she gets what she needs. Daisy's palliative consultant has just been to visit her and it needed her to point out to me that most children don't have a tummy that looks like Daisy so my role has to be to ensure that everyone involved in her care knows what to do - after all she currently has five different bags attached, all with separate labels! Plus a huge scar from her chest to her pubic bone, plus a hickman line and a gastrostomy button and jejenostomy button - I'm so used to all of this I forget that to the unitiated this is all be bit daunting, particularly when you factor in her complex pain management regimen and the fact that she mainly signs to communicate.
Today Andy and I celebrate our 19th wedding anniversary, we really, really did not know what life would have in store for us all those years ago, surviving redundancy, career change, bereavement and the diagnosis of a child with Asperger syndrome would be enough before throwing in the white knuckle ride we embarked on when I was taken into hospital in premature labour in November 2004, but we both believe that we are the living example of what doesn't kill you makes you stronger. Our marriage is stronger today than ever, helped by a healthy sense of humour and stamina to keep going on this ultra marathon that life is throwing at us.
Her bowel has still completely shut down but her mitrofanoff is working well. There is nothing going on that we did not expect or anticipate, from her need to be transfused soon to her low grade fever (as a result of bacteria being release from the colon when it was removed). So while the first big and dramatic milestone, the surgery, is over with no major dramas or suprises, the challenge will now be over the next days and weeks as hopefully Daisy's gastrointestinal system starts to work and we are able to assess the level of chronic pain she has that will need managing from an ongoing basis.
The challenge for me is to turn the gears down and move out of sprint rhythm and onto a marathon pace. It's easy to want to move forward quickly and set yourself up for disappointment, especially after the adrenaline fuelled last few days but the reality, as any parent of a child with complex gastro needs will tell you, it's two steps forward and one step back. While appearing pessimistic to some doctors who don't know Daisy and quite what she is capable of, I prefer to describe myself as realistic. I anticpate that things will go wrong, multiple spanners will be thrown into the works on our journey to get Daisy back home, and if things happen sooner than I anticipated then that's a bonus!
We are on a different ward to our usual Rainforest and under the Surgery and Urology teams, I'm letting them get to know me so that I don't come across as a pushy mother. It's so difficult when your child is so incredibly complex and your main role is to know all about her to reign it in a bit while the professionals do their job! However I (and of course Andy who is a complete hands on dad too!) am first and foremost Daisy's advocate, making sure that she gets what she needs. Daisy's palliative consultant has just been to visit her and it needed her to point out to me that most children don't have a tummy that looks like Daisy so my role has to be to ensure that everyone involved in her care knows what to do - after all she currently has five different bags attached, all with separate labels! Plus a huge scar from her chest to her pubic bone, plus a hickman line and a gastrostomy button and jejenostomy button - I'm so used to all of this I forget that to the unitiated this is all be bit daunting, particularly when you factor in her complex pain management regimen and the fact that she mainly signs to communicate.
Today Andy and I celebrate our 19th wedding anniversary, we really, really did not know what life would have in store for us all those years ago, surviving redundancy, career change, bereavement and the diagnosis of a child with Asperger syndrome would be enough before throwing in the white knuckle ride we embarked on when I was taken into hospital in premature labour in November 2004, but we both believe that we are the living example of what doesn't kill you makes you stronger. Our marriage is stronger today than ever, helped by a healthy sense of humour and stamina to keep going on this ultra marathon that life is throwing at us.
10 September 2011
...and onto the next phase
well, Daisy now officially has only 5cm of large bowel left, a Mitrofanoff channel formed from her appendix for catheterisation and as a bonus a repaired parastomal hernia and a new chapter in her life has begun.
When we met with the surgeons the day before the operation the enormity of what we were consenting for on her behalf hit us, this was huge surgery, with all sorts of risks and possibilities for complications but having spent six hours in theatre yesterday the consensus
among all the team involved is that it could not have gone better. There were so many concerns about abdominal adhesions, viability of her appendix to be used for the Mitrofanoff, bleeding - however everything went according to plan and Daisy is now back on the ward and the long road to recovery can begin.
Again the terrible night she experienced the night before the operation confirmed to us why the surgery needed to go ahead. We have not been able to put any feed into her jejenostomy for many weeks now as she has been refluxing so badly and the night before her operation she vomited constantly and was pouring bile out of her gastrostomy. We hope that this deterioration is not permanent but only time will tell.
In the meantime we are now focused on Daisy's recovery. Not surprisingly her bowel did not like being handled and has shut down, it coUld take a while before it starts to work again. She has an epidural for pain relief plus a constant infusion of double strength ketamine and morphine, we just need to keep her comfortable and let her recover from the anaesthetic , as always our mantra will be " one day at a time"
When we met with the surgeons the day before the operation the enormity of what we were consenting for on her behalf hit us, this was huge surgery, with all sorts of risks and possibilities for complications but having spent six hours in theatre yesterday the consensus
among all the team involved is that it could not have gone better. There were so many concerns about abdominal adhesions, viability of her appendix to be used for the Mitrofanoff, bleeding - however everything went according to plan and Daisy is now back on the ward and the long road to recovery can begin.
Again the terrible night she experienced the night before the operation confirmed to us why the surgery needed to go ahead. We have not been able to put any feed into her jejenostomy for many weeks now as she has been refluxing so badly and the night before her operation she vomited constantly and was pouring bile out of her gastrostomy. We hope that this deterioration is not permanent but only time will tell.
In the meantime we are now focused on Daisy's recovery. Not surprisingly her bowel did not like being handled and has shut down, it coUld take a while before it starts to work again. She has an epidural for pain relief plus a constant infusion of double strength ketamine and morphine, we just need to keep her comfortable and let her recover from the anaesthetic , as always our mantra will be " one day at a time"
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