It's always great when a plan comes together and the beginning of this year has seen all the frantic and stressful attempts at trying to get some co-ordination around Daisy' care paying off at last.
As we near the end of March she has already had two hospital stays involving multi-disciplinary teams and we have started getting some more plans and answers in place as a result. The first stay, which I blogged about here) involved surgery to assess her airway and remove a second set of adenoids. She moved onto the neurology ward, via the urodynamics day ward and spent 3 days hooked up to a telemetry machine. Daisy was amazing - not only had she started the week having to endure another anaesthetic and surgery, she then had to have some very painful tests on her bladder, closely followed by having EEG electrodes glued and taped to her head.
Showing posts with label special needs. costello syndrome. Show all posts
Showing posts with label special needs. costello syndrome. Show all posts
23 March 2014
19 September 2012
Back to school blues...
I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal. Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.
I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me. Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy. Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.
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.....
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