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.
23 September 2011
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"
7 September 2011
A Summer, of sorts
Compared to the past three years, this has been the best summer yet for our family, however as always it was marked by hospital stays and emergency dashes to A&E. In between those times we did manage to fit in some family fun and even had a whole two weeks when we were not in hospital with Daisy, managing instead to have a wonderful family holiday in Devon, thanks to the wonderful charity Torbay Holiday Helper's Network.
But the reality is that no parent should be excited about the fact that they have achieved a two week gap between their child's hospital stays, it is no way to live wondering if the next temperature spike is the one that does not respond to IV paracetamol or is the start of a septic episode. At times it feels like our phone is on speed dial to the London Ambulance Service. Each time Daisy has a hospital admission or a bad night it just confirmed to us that we are right in making the decision in going ahead with the colectomy surgery, this is no way to live, her pain management regimen has been going up and up, and it is not an option to continue like this The other thing that has become evident is the deterioration in Daisy's bladder function making the Mitrofanoff surgery a complete no brainer.
So, after a wonderful summer where we really did manage to fit in quality family time between hospital stays, Daisy will return to Great Ormond Street Hospital tomorrow and will go to theatre on Friday morning for surgery to remove most of her large bowel and to from a Mitrofanoff from her bladder through which we will be able to catheterise her. She will spend some time in intensive care where she will have an epidural for the pain and after that no-one knows, it truly will be one day at a time. We know that by taking away most of the large bowel we are removing a toxic source which is contributing to her infections and pain (her colon is inflammed and leaks bugs into the bloodstream which are increasinly becoming resistant to the antibiotics we use to treat Daisy). We also know that removing a permanent catheter and forming a new channel will hopefully reduce her risk of infection and make her more comfortable. Our biggest wish for this surgery is that it allows her more time at home with us and at her beloved school with her friends. We hope it will help reduce some of her pain but it will at least help her symptom care team better target her pain relief. We hope it will improve her quality of life and give us all more time together. But no-one knows, as always with Daisy we are in completely uncharted territory, and as everyone who knows her says, she writes her own book. We know that her recovery will not be straightforward and we know that this will be another lengthy hospital stay - knowing these things in advance have helped us prepare in some practical ways, but in terms of emotional preparation, there is nothing we can do. Andy likened our lives at the moment as like being in a car knowing it is going to crash but not knowing how bad the crash will be - we a bracing ourselves, and hoping......
So this is it, as every milestone and procedure gets bigger and bigger this is the biggest surgery in Daisy's life, we are in her hands, she has the constitution of an Ox and a lust for life and all we can do is support her in this. Whatever works for you, prayer, positive thoughts, crossing fingers, please do this for Daisy on Friday morning GMT as we hand her over to the best team of surgeons, & anaesthetists you could wish for....
But the reality is that no parent should be excited about the fact that they have achieved a two week gap between their child's hospital stays, it is no way to live wondering if the next temperature spike is the one that does not respond to IV paracetamol or is the start of a septic episode. At times it feels like our phone is on speed dial to the London Ambulance Service. Each time Daisy has a hospital admission or a bad night it just confirmed to us that we are right in making the decision in going ahead with the colectomy surgery, this is no way to live, her pain management regimen has been going up and up, and it is not an option to continue like this The other thing that has become evident is the deterioration in Daisy's bladder function making the Mitrofanoff surgery a complete no brainer.
So, after a wonderful summer where we really did manage to fit in quality family time between hospital stays, Daisy will return to Great Ormond Street Hospital tomorrow and will go to theatre on Friday morning for surgery to remove most of her large bowel and to from a Mitrofanoff from her bladder through which we will be able to catheterise her. She will spend some time in intensive care where she will have an epidural for the pain and after that no-one knows, it truly will be one day at a time. We know that by taking away most of the large bowel we are removing a toxic source which is contributing to her infections and pain (her colon is inflammed and leaks bugs into the bloodstream which are increasinly becoming resistant to the antibiotics we use to treat Daisy). We also know that removing a permanent catheter and forming a new channel will hopefully reduce her risk of infection and make her more comfortable. Our biggest wish for this surgery is that it allows her more time at home with us and at her beloved school with her friends. We hope it will help reduce some of her pain but it will at least help her symptom care team better target her pain relief. We hope it will improve her quality of life and give us all more time together. But no-one knows, as always with Daisy we are in completely uncharted territory, and as everyone who knows her says, she writes her own book. We know that her recovery will not be straightforward and we know that this will be another lengthy hospital stay - knowing these things in advance have helped us prepare in some practical ways, but in terms of emotional preparation, there is nothing we can do. Andy likened our lives at the moment as like being in a car knowing it is going to crash but not knowing how bad the crash will be - we a bracing ourselves, and hoping......
So this is it, as every milestone and procedure gets bigger and bigger this is the biggest surgery in Daisy's life, we are in her hands, she has the constitution of an Ox and a lust for life and all we can do is support her in this. Whatever works for you, prayer, positive thoughts, crossing fingers, please do this for Daisy on Friday morning GMT as we hand her over to the best team of surgeons, & anaesthetists you could wish for....
7 August 2011
Surgery Plans
Oh my goodness, a whole month has flown by and I have not updated this blog - big apologies!!! I think I'm going to cut and paste some of my statuses from Daisy's Angels (www.facebook.com/daisysangels) from now on so that those who don't use facebook can still see what is happening in our lives...
It's been a funny few weeks, lots of real progress in terms of plans for Daisy, more emergency trips by ambulance and time at our local hospital and we are even managing time at home - for the first time in years I'm actually getting to spend part of the summer holidays with all the children under the same roof.
The biggest news is that we had our much anticipated meeting with Daisy's surgeon at Great Ormond Street. This was the meeting to discuss whether or not a colectomy was an option for her and whether he was even prepared to carry out the surgery. Andy and I had talked and talked about this prior to the meeting, veering from being 100% sure we wanted to go ahead to deciding that it was not an option as there were no guarantees. In the end meeting with the surgeon reassured us of the safety of performing the surgery, he will not perform a full proctocolectomy as this is just too big for anyone let alone Daisy, instead he will take out most of her large bowel which will hopefully massively reduce the colitis symptoms she experiences every day. It will also mean that she can come off the drugs which supress her immunity and render her at risk of infection and we can treat the colitis more conservatively. This will not be the only surgery Daisy will have at the time, Daisy's Urology surgeon will also perform surgery on her bladder at the same time to help manage the symptoms of it's deteriorating function. Initially the plan was to form a vesicostomy, a stoma, from the bladder into her abdomen to allow urine to drain out into a nappy. After much consultation and discussion however everyone agreed that this was not an option for Daisy, a little girl desparate to get out of nappies. Instead along with the colectomy surgery Daisy will have a Mitrofanoff procedure where the appendix which will be removed as part of the colectomy will be used to form a channel from her bladder to her abdomen allowing us to catheterise her intermittently. Individually these surgeries are big, performed together on a girl who is not in optimum health they are huge. She will need to spend some time post operatively in intensive care and it is likely that we will be looking at another prolonged stay in Great Ormond Street, however our hope, which comes with no guarantees, is that once she has recovered from the surgery, we can reduce some of the drugs she is on which have such awful side effects, her pain may be more manageable and she will be less susceptible to the infections which often lead to emergency trips to the hospital. Making the decision to go ahead with the surgery was the hardest decision we have had to make for Daisy - we don't know if it will make things better or worse but the main thing that swung it for us is that she or we can't keep going on as she is.
The pain she experiences, mainly at night, is getting worse - she now has regular doses of morphine plus ketamine and then when this doesn't work sedating medicine to help her sleep. We are seeing a big deterioration in her health, her hair is falling out, she is getting tireder. But her lust for life is immense - she managed very few days in school this year but every single day was packed to the brim, she won a medal in sports day, had fun times with her friends, learned new skills. She is vocalising more and more, singing away to herself in bed and her hands never stop signing. She has so much she needs to do and this is why we made the decision to go ahead with the surgery - desparate times call for desparate measures so although it doesn't have any guarantees to take the pain away we just hope that it will keep her hospital trips down and improve her quality of life so that she can enjoy the things she loves in life.
In the past month we have called 999 three times, each time Daisy has spiked high temperatures and developed sepsis, mainly from the bugs (ecoli & candida) which are permanent residents in her bladder. I used to drive her to hospital myself when she became ill but she is going downhill so quickly now we have been told not to risk it, so now the whole neighbourhood knows when Daisy has gone back into hospital. But as quickly as she goes downhill, Daisy can bounce back once she has had enough doses of IV antibiotics. So the moment she can come home we have been out and about having fun as a family. We visited Peppa Pig World earlier this week - Daisy was beside herself with excitement, as everyone who knows her knows, she adores Peppa Pig, almost as much as she loves Mickey and Minnie.
We are keeping everything crossed that we can also manage a trip to Devon towards the end of next week, Daisy will be able to meet her new cousin and we will be able to have a lunch to celebrate my mother's 70th birthday (Daisy will be in Great Ormond Street when it is Grandma's birthday so we are having an early celebration). We have been given a date of 9th September for Daisy's surgery, this gives us a few more weeks of family time and also hopefully gives us a chance to be out of hospital in time for Christmas. We are in Daisy's hands as always but have learned flexibility and whatever happens we will adapt to make the best of the situation.
It's been a funny few weeks, lots of real progress in terms of plans for Daisy, more emergency trips by ambulance and time at our local hospital and we are even managing time at home - for the first time in years I'm actually getting to spend part of the summer holidays with all the children under the same roof.
The biggest news is that we had our much anticipated meeting with Daisy's surgeon at Great Ormond Street. This was the meeting to discuss whether or not a colectomy was an option for her and whether he was even prepared to carry out the surgery. Andy and I had talked and talked about this prior to the meeting, veering from being 100% sure we wanted to go ahead to deciding that it was not an option as there were no guarantees. In the end meeting with the surgeon reassured us of the safety of performing the surgery, he will not perform a full proctocolectomy as this is just too big for anyone let alone Daisy, instead he will take out most of her large bowel which will hopefully massively reduce the colitis symptoms she experiences every day. It will also mean that she can come off the drugs which supress her immunity and render her at risk of infection and we can treat the colitis more conservatively. This will not be the only surgery Daisy will have at the time, Daisy's Urology surgeon will also perform surgery on her bladder at the same time to help manage the symptoms of it's deteriorating function. Initially the plan was to form a vesicostomy, a stoma, from the bladder into her abdomen to allow urine to drain out into a nappy. After much consultation and discussion however everyone agreed that this was not an option for Daisy, a little girl desparate to get out of nappies. Instead along with the colectomy surgery Daisy will have a Mitrofanoff procedure where the appendix which will be removed as part of the colectomy will be used to form a channel from her bladder to her abdomen allowing us to catheterise her intermittently. Individually these surgeries are big, performed together on a girl who is not in optimum health they are huge. She will need to spend some time post operatively in intensive care and it is likely that we will be looking at another prolonged stay in Great Ormond Street, however our hope, which comes with no guarantees, is that once she has recovered from the surgery, we can reduce some of the drugs she is on which have such awful side effects, her pain may be more manageable and she will be less susceptible to the infections which often lead to emergency trips to the hospital. Making the decision to go ahead with the surgery was the hardest decision we have had to make for Daisy - we don't know if it will make things better or worse but the main thing that swung it for us is that she or we can't keep going on as she is.
The pain she experiences, mainly at night, is getting worse - she now has regular doses of morphine plus ketamine and then when this doesn't work sedating medicine to help her sleep. We are seeing a big deterioration in her health, her hair is falling out, she is getting tireder. But her lust for life is immense - she managed very few days in school this year but every single day was packed to the brim, she won a medal in sports day, had fun times with her friends, learned new skills. She is vocalising more and more, singing away to herself in bed and her hands never stop signing. She has so much she needs to do and this is why we made the decision to go ahead with the surgery - desparate times call for desparate measures so although it doesn't have any guarantees to take the pain away we just hope that it will keep her hospital trips down and improve her quality of life so that she can enjoy the things she loves in life.
In the past month we have called 999 three times, each time Daisy has spiked high temperatures and developed sepsis, mainly from the bugs (ecoli & candida) which are permanent residents in her bladder. I used to drive her to hospital myself when she became ill but she is going downhill so quickly now we have been told not to risk it, so now the whole neighbourhood knows when Daisy has gone back into hospital. But as quickly as she goes downhill, Daisy can bounce back once she has had enough doses of IV antibiotics. So the moment she can come home we have been out and about having fun as a family. We visited Peppa Pig World earlier this week - Daisy was beside herself with excitement, as everyone who knows her knows, she adores Peppa Pig, almost as much as she loves Mickey and Minnie.
We are keeping everything crossed that we can also manage a trip to Devon towards the end of next week, Daisy will be able to meet her new cousin and we will be able to have a lunch to celebrate my mother's 70th birthday (Daisy will be in Great Ormond Street when it is Grandma's birthday so we are having an early celebration). We have been given a date of 9th September for Daisy's surgery, this gives us a few more weeks of family time and also hopefully gives us a chance to be out of hospital in time for Christmas. We are in Daisy's hands as always but have learned flexibility and whatever happens we will adapt to make the best of the situation.
5 July 2011
While staying at the hospice Daisy was delighted to receive a T shirt of her namesake from one of our friends at Post Pals (http://www.postpals.co.uk/)
4 July 2011
Give us a break Mr Cameron
Well as always the long gap between posts is because the best laid plans in our world really never go according to plan. I wish I had the luxury of time to do more frequent updates but I squash my blogging in at the end of what is normally an exhausting day....and that is most days at the moment! (for those of you on facebook I have setup a page where you can get daily updates on Daisy, it's at www.facebook.com/daisysangels, and for those who use twitter, I tweet as @stephnimmo)
Of course I should have realised that the "odd temperature spikes" that I referred to at the end of my last post would actually become something more than that - while at Chase, Daisy developed a very high temperature, reaching the level where we have to take her back into hospital. However having just reclaimed her back for ourselves, Andy and I were loathe to take her back to hospital, especially as the one nearest our hospice is not our regular haunt. We dug our heels in as in herself Daisy was well, and once again the wonderful team at our hospice helped us by arranging to have her bloods processed at the nearest hospital and also for IV antibiotics to treat what turned out to be yet another urine infection. We were also able to transfer to Shooting Star hospice which is under the same management as Chase Hospice and is significantly closer to home for us. This meant we were able to manage all of Daisy's IV treatment with the support of the hospice nursing staff rather than struggling on at home.
So we arrived home properly after a lovely 10 day respite break on June 17 and we had a family day out to Wimbledon Village fair the next day - sadly this was rounded off with a call for an ambulance as Daisy's temperature sky rocketted the moment I flushed her hickman line to connect her TPN, no time to spare this could be a line infection! More IV antibiotics, more juggling childcare, but at least we were closer to home. This also meant that although Daisy was back in hospital I did not have to miss my longed for return to Glastonbury Music Festival with Theo and Xanthe. Those few days in Somerset, in the craziness of the festival, ankle deep in mud, camping in the rain, helped me recharge my batteries and find a little time for me. We arrived back home on the Sunday, Daisy had been discharged from hospital and we tried, once again, just to function as a family of six under one roof.
Daisy went back to school for her first full day since February last Monday. She was so pleased to see her teacher Beth and her intervenor (specialist assistant for dual sensory impaired children), Carmen again as well as her school friends. I know everyone at her school, Linden Lodge, was delighted to welcome her back. They have always been so accomodating of Daisy's ever increasing medical needs and frequent hospitalisations and are one of the few constants in our crazy world. Last Monday was a really hot day and by the evening Andy and I put Daisy's lethargy down to being overtired, although in the back of our minds alarm bells were ringing. By 6am the next morning Daisy had spiked yet another temp. It broke my heart to call the ambulance, we could not wait until the other children had gone to school so with only one full day back at home and her siblings eating their breakfast and getting ready to go to school, Daisy went back to hospital again. A week later she is still there.
She has finished her IV antibiotics, this is the fourth course she has been on since staring back on immunosuppressant therapy for her diversion colitis around 6 weeks ago. The colitis has not improved but in herself Daisy has got worse, infection after infection and with the constant antibiotic usage she now has a candida infection in her bladder. This is being treated in hospital as there is a big risk of the candida bugs translocating into her line and once candida gets into a hickman line not only is it a very serious infection it is very difficult to treat and the line has to be removed. She is on her 7th hickman line at the moment and we want to keep hold of this for as long as possible.
At the moment Daisy has a urethral catheter in situ as her supra pubic one (her second) fell out. Next week we will meet with her urology surgeon to talk about a vesicostomy which is a permanent stoma from her bladder, this will mean she will no longer need a catheter but will always be in nappies. We had hoped to avoid this situation as most children with Costello Syndrome are potty trained sooner or later, however we have now realised that this is the least of our issues compared to everything else we are facing.
The biggest issue is whether Daisy remains on immunosuppressant therapy or steroids - in staying on them we are hopefully preventing the diversion colitis from becoming worse although it is likely that she will continue to have flare ups which will require a hospital stay and IV pulsed steroids (which she hates as they make her feel awful) the alternative is the procto-colectomy surgery. This had originally been discounted by the gastro team however now that she is getting infection after infection on the drug therapy her Gastro consultant has asked her surgeon to consider whether he would now be prepared to do this surgery. This would probably be an open procedure as opposed to keyhole as she has had so many surgeries before, it would involved complete removal of her large bowel and rectum and negate the need for drug therapy to treat the diversion colitis. We meet with her surgeon next week to discuss all of this. There are huge risks with both options and the decision we are being faced with is one that no parent should have to make, but at the end of the day Andy and I have to be able to say that we did everything possible for Daisy, and our instinct is that, despite the risks, surgery gives her a fighting chance of some sort of quality of life, even though it means yet another extended stay at GOSH.
So we are now reaching another crossroads in our lives with Daisy and the decisions we make for her are harder and harder. What is even harder is the unpredictability of our lives, difficult enough for any family but try managing our situation where one of the children has Aspergers syndrome and craves predictability, routine and stability. We can offer none of this to Theo at the moment, and at times it is a struggle for him and for us as we try to keep things on a relatively even keel for all the children. It is not only Daisy's life that is being affected but her siblings lives, often Andy and I feel that we are parenting by rota - one is at the hospital while one is at home. We juggle constantly, but we are still determined that our children should have a childhood so we push ourselves to the limits to ensure trips to concerts, the cinema, birthday parties are arranged - the majority of time with only one of us able to participate while the other cares for Daisy. Family trips are difficult to plan as we really do not know what each day will throw at us, so we seize opportunities when we can . We can't go far afield - and by this I mean to visit family, for fear of ending up in a hospital which does not know Daisy. This world is very isolating and immensly stressful and we have tried to make sure we look after ourselves so that we do not buckle under the stress.
So how are we expected to look after ourselves when we do not get any proper respite as a couple or a family from the stresses and strains of our life? The only true respite for us is when we stay at our hospice - there we know nurses will care for Daisy giving us a break, we can stay with her as a family or we can leave her there in order to have time with the other three children. Children's hospices receive no government funding, they are funded solely on voluntary donations, we receive 15 allocated nights a year to stay at our hospice at no cost to the taxpayer but with the benefit that we do not fall apart from the stress. We had also been awarded two funded nights a month at the hospice, paid for by our Primary care trust as no other respite package or facility was in place locally or could meet Daisy's needs. This was how we were able to transition from our long GOS stay to home via the hospice, by using the nights we had not been able to use while in hospital. So you will understand my frustration and anger with the system I am up against when I tell you that we will no longer receive these nights any month Daisy is in hospital (so that's July up the swannee) - apparantly when Daisy is cared for in hospital, this is counted as respite, even though Andy and I do her TPN, administer her drugs, change her stoma bags, replace blocked jejenostomy tubes, act as her translator, play specialist, occupational therapist, physiotherapist - oh and be her parents........no because our daughter has the misfortune to be very ill a lot of the time she costs our Primary Care Trust a huge amount of money, money they have to pay to the Hospital Trust each time she is an inpatient. This is how the NHS internal market works and sadly the sicker and more complex your child the more money they cost and it would appear the less likely you will be to get respite support.
Andy and I are creaking under the strain of looking after Daisy and the other three children, we have been promised a nurse three nights a week, however this may not happen until the end of July and all this gives us is three nights where we don't have to physically get up to Daisy when she cries, we can't leave the house and the nurse will not do TPN (they will be able to administer her pain relief though so I suppose this is some help, if it every materialises). Our funded nights at the hospice have gone because let's face it, will Daisy ever complete a month when she is not in hospital. This means that we are still condemned to parenting by rota, not able to go to the cinema, book theatre tickets, visit our families, make any plans...all those things we used to take for granted, and all because we have done the right thing and have chosen not to give up on our child.
I would love 5 minutes with David Cameron, who made such a deal about defending the rights of carers in one of the televised election debates - I would ask him why are we in a situation where parents of the most complex, fragile children who are doing what is morally right by caring for their child actually have less rights and freedom than prisoners. We chose this path, we knew Daisy would be disabled, we chose to be trained in all her medical care, we will never give up on her but sadly it really feels like by doing the right thing we have done the wrong thing. Perhaps Andy should give up work too and we can both claim benefits, perhaps we should leave Daisy in the hospital long term so that we get a break??? Obviously anyone who knows us knows this is not going to happen...but it does make you wonder why our child is seen as a cost and the more complex she is the higher the cost and therefore the lower the support package....where, Mr Cameron, is the logic in that?
Of course I should have realised that the "odd temperature spikes" that I referred to at the end of my last post would actually become something more than that - while at Chase, Daisy developed a very high temperature, reaching the level where we have to take her back into hospital. However having just reclaimed her back for ourselves, Andy and I were loathe to take her back to hospital, especially as the one nearest our hospice is not our regular haunt. We dug our heels in as in herself Daisy was well, and once again the wonderful team at our hospice helped us by arranging to have her bloods processed at the nearest hospital and also for IV antibiotics to treat what turned out to be yet another urine infection. We were also able to transfer to Shooting Star hospice which is under the same management as Chase Hospice and is significantly closer to home for us. This meant we were able to manage all of Daisy's IV treatment with the support of the hospice nursing staff rather than struggling on at home.
So we arrived home properly after a lovely 10 day respite break on June 17 and we had a family day out to Wimbledon Village fair the next day - sadly this was rounded off with a call for an ambulance as Daisy's temperature sky rocketted the moment I flushed her hickman line to connect her TPN, no time to spare this could be a line infection! More IV antibiotics, more juggling childcare, but at least we were closer to home. This also meant that although Daisy was back in hospital I did not have to miss my longed for return to Glastonbury Music Festival with Theo and Xanthe. Those few days in Somerset, in the craziness of the festival, ankle deep in mud, camping in the rain, helped me recharge my batteries and find a little time for me. We arrived back home on the Sunday, Daisy had been discharged from hospital and we tried, once again, just to function as a family of six under one roof.
Daisy went back to school for her first full day since February last Monday. She was so pleased to see her teacher Beth and her intervenor (specialist assistant for dual sensory impaired children), Carmen again as well as her school friends. I know everyone at her school, Linden Lodge, was delighted to welcome her back. They have always been so accomodating of Daisy's ever increasing medical needs and frequent hospitalisations and are one of the few constants in our crazy world. Last Monday was a really hot day and by the evening Andy and I put Daisy's lethargy down to being overtired, although in the back of our minds alarm bells were ringing. By 6am the next morning Daisy had spiked yet another temp. It broke my heart to call the ambulance, we could not wait until the other children had gone to school so with only one full day back at home and her siblings eating their breakfast and getting ready to go to school, Daisy went back to hospital again. A week later she is still there.
She has finished her IV antibiotics, this is the fourth course she has been on since staring back on immunosuppressant therapy for her diversion colitis around 6 weeks ago. The colitis has not improved but in herself Daisy has got worse, infection after infection and with the constant antibiotic usage she now has a candida infection in her bladder. This is being treated in hospital as there is a big risk of the candida bugs translocating into her line and once candida gets into a hickman line not only is it a very serious infection it is very difficult to treat and the line has to be removed. She is on her 7th hickman line at the moment and we want to keep hold of this for as long as possible.
At the moment Daisy has a urethral catheter in situ as her supra pubic one (her second) fell out. Next week we will meet with her urology surgeon to talk about a vesicostomy which is a permanent stoma from her bladder, this will mean she will no longer need a catheter but will always be in nappies. We had hoped to avoid this situation as most children with Costello Syndrome are potty trained sooner or later, however we have now realised that this is the least of our issues compared to everything else we are facing.
The biggest issue is whether Daisy remains on immunosuppressant therapy or steroids - in staying on them we are hopefully preventing the diversion colitis from becoming worse although it is likely that she will continue to have flare ups which will require a hospital stay and IV pulsed steroids (which she hates as they make her feel awful) the alternative is the procto-colectomy surgery. This had originally been discounted by the gastro team however now that she is getting infection after infection on the drug therapy her Gastro consultant has asked her surgeon to consider whether he would now be prepared to do this surgery. This would probably be an open procedure as opposed to keyhole as she has had so many surgeries before, it would involved complete removal of her large bowel and rectum and negate the need for drug therapy to treat the diversion colitis. We meet with her surgeon next week to discuss all of this. There are huge risks with both options and the decision we are being faced with is one that no parent should have to make, but at the end of the day Andy and I have to be able to say that we did everything possible for Daisy, and our instinct is that, despite the risks, surgery gives her a fighting chance of some sort of quality of life, even though it means yet another extended stay at GOSH.
So we are now reaching another crossroads in our lives with Daisy and the decisions we make for her are harder and harder. What is even harder is the unpredictability of our lives, difficult enough for any family but try managing our situation where one of the children has Aspergers syndrome and craves predictability, routine and stability. We can offer none of this to Theo at the moment, and at times it is a struggle for him and for us as we try to keep things on a relatively even keel for all the children. It is not only Daisy's life that is being affected but her siblings lives, often Andy and I feel that we are parenting by rota - one is at the hospital while one is at home. We juggle constantly, but we are still determined that our children should have a childhood so we push ourselves to the limits to ensure trips to concerts, the cinema, birthday parties are arranged - the majority of time with only one of us able to participate while the other cares for Daisy. Family trips are difficult to plan as we really do not know what each day will throw at us, so we seize opportunities when we can . We can't go far afield - and by this I mean to visit family, for fear of ending up in a hospital which does not know Daisy. This world is very isolating and immensly stressful and we have tried to make sure we look after ourselves so that we do not buckle under the stress.
So how are we expected to look after ourselves when we do not get any proper respite as a couple or a family from the stresses and strains of our life? The only true respite for us is when we stay at our hospice - there we know nurses will care for Daisy giving us a break, we can stay with her as a family or we can leave her there in order to have time with the other three children. Children's hospices receive no government funding, they are funded solely on voluntary donations, we receive 15 allocated nights a year to stay at our hospice at no cost to the taxpayer but with the benefit that we do not fall apart from the stress. We had also been awarded two funded nights a month at the hospice, paid for by our Primary care trust as no other respite package or facility was in place locally or could meet Daisy's needs. This was how we were able to transition from our long GOS stay to home via the hospice, by using the nights we had not been able to use while in hospital. So you will understand my frustration and anger with the system I am up against when I tell you that we will no longer receive these nights any month Daisy is in hospital (so that's July up the swannee) - apparantly when Daisy is cared for in hospital, this is counted as respite, even though Andy and I do her TPN, administer her drugs, change her stoma bags, replace blocked jejenostomy tubes, act as her translator, play specialist, occupational therapist, physiotherapist - oh and be her parents........no because our daughter has the misfortune to be very ill a lot of the time she costs our Primary Care Trust a huge amount of money, money they have to pay to the Hospital Trust each time she is an inpatient. This is how the NHS internal market works and sadly the sicker and more complex your child the more money they cost and it would appear the less likely you will be to get respite support.
Andy and I are creaking under the strain of looking after Daisy and the other three children, we have been promised a nurse three nights a week, however this may not happen until the end of July and all this gives us is three nights where we don't have to physically get up to Daisy when she cries, we can't leave the house and the nurse will not do TPN (they will be able to administer her pain relief though so I suppose this is some help, if it every materialises). Our funded nights at the hospice have gone because let's face it, will Daisy ever complete a month when she is not in hospital. This means that we are still condemned to parenting by rota, not able to go to the cinema, book theatre tickets, visit our families, make any plans...all those things we used to take for granted, and all because we have done the right thing and have chosen not to give up on our child.
I would love 5 minutes with David Cameron, who made such a deal about defending the rights of carers in one of the televised election debates - I would ask him why are we in a situation where parents of the most complex, fragile children who are doing what is morally right by caring for their child actually have less rights and freedom than prisoners. We chose this path, we knew Daisy would be disabled, we chose to be trained in all her medical care, we will never give up on her but sadly it really feels like by doing the right thing we have done the wrong thing. Perhaps Andy should give up work too and we can both claim benefits, perhaps we should leave Daisy in the hospital long term so that we get a break??? Obviously anyone who knows us knows this is not going to happen...but it does make you wonder why our child is seen as a cost and the more complex she is the higher the cost and therefore the lower the support package....where, Mr Cameron, is the logic in that?
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