Visiting Peppa Pig World
Chilling with big sis Xanthe
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?
7 June 2011
Family Reunited
At long last and 15 weeks after being admitted for a 5 day admission, Daisy is safely tucked up in bed in our beloved Chase hospice. Her arrival here, not suprisingly delayed by several more gigantic spanners in the works.
The temperature spikes I blogged about in my last post were after all caused by a line infection and Daisy was very poorly for two weeks. At one point she was on five different intravenous drugs plus iv pain killers and all her usual meds. The poor nurses looking after her on a one to one basis worked non-stop and went home exhausted. The infection was not shifting and turned out to be a fungal infection which meant her hickman line had to come out. In order to prevent re-infection the best option was not to reinsert a new central line immediately but instead insert a temporary PICC line which is like a very long canula but could be used to give TPN. To do this Daisy needed the Interventional Radiology Service in GOS. A service we are always so grateful to have available to us as they have optimised the potential Daisy has for line insertions however the downside of this very specialised service is that they only operate during weekdays and between the hours of 9 -5 (with a break for lunch of course, this is the public sector!). So Daisy had to wait her turn among all the other top priority children in GOS, it is easy to become deeply frustrated with this situation until you remember this is no ordinary hospital, there are very few paediatric interventional radiology services and the children they are dealing with are the most difficult. For Daisy multiple previous line insertions means that we need the best expertise available to ensure that we do not lose ever decreasing line sites.
Eventually Daisy's line was taken out by the surgeons as she was becoming increasingly unwell and we had to rely on two very precious canulas, inserted by anaesthetists to provide fluids and iv drugs until the interventional radiology slot became available. Within hours she lost one cannula, her little veins are so scarred from previous lines and we held onto her other cannula for a day until that went too and she had to be sedated for a new one to be inserted as every procedure was becoming so traumatic. Eventually, Daisy's name came up for her slot in interventional radiology - following some timely intervention from the on call gastro consultant who questioned the ethics of continuing to keep a child whose only source of nutrition was via a central line waiting for more than 24 hours. Instead of a PICC line she ended up with a new hickman line as the delay had worked in our favour, she had been 72 hours free of plastic in her main veins and hopefully this had put paid to any lingering bugs. At the same time she had to have a new supra pubic catheter inserted, her brand new one, inserted the previous week had failed and come out and the tract where it had been inserted had closed immediately.
The new catheter insertion caused very heavy bleeding and Daisy needed 3 transfusions of FFP or fresh frozen plasma as well as a blood transfusion.
By the beginning of half term things were looking good following what we thought was the last minute drama stopping us from getting to Chase Hospice. I took the older children to my mother's house in Wales as it was the start of yet another half term holiday with Daisy in hospital , and Andy and I made plans for a hospice transfer on the Tuesday with a family reunion on the Wednesday. We even pushed the boat out and stayed in a hotel on what we thought was our last night in hospital........only to be greeting first thing on the Tuesday morning with the news that the brand new hickman line had migrated into her chest cavity and overnight Daisy's neck had swelled up and the plastic surgeons were reviewing the situation...
I'm very glad I did not see Daisy immediately after her line had moved from the jugular vein spilling TPN out under her skin, apparantly it was not a pretty site. When we saw her she was black and blue and very uncomfortable. The good news was the the Plastics team confirmed that there was no lasting tissue damage the bad new was obviously we were going to lose this precious line. So the next day Daisy went back to interventional radiology for her 8th anaesthetic and 7th central line. To say she was fed up is an understatement, she just wanted to get out of the hospital and get away. Ontop of this she was coverered in bruises caused by her poor blood clotting, a side effect of the liver damaged caused by long term TPN use. However she recovered well from this final surgery and made it known to everyone sho came near her that she wanted to go. So after 15 long and traumatic weeks we left Rainforest Ward and transferred to Chase Hospice.
We had asked our consultant at the very beginning of our hospital stay for a second opinion on Daisy's treatment, not because we had any doubts about the treatment she was receiving but as her parents it is vital that we leave no stone unturned in our quest to give Daisy the best posssible quality of life. We were very fortunate that he was able to arrange for a Professor from the US who is a world expert on Paediatric Dysmotility Disorders to come and review Daisy when he was passing through London for a couple of days en route to a conference, Meeting the Professor was both reasurring and daunting - reasurring because he confirmed to us that Daisy is looked after by the best in Europe when it comes to her condition and that everything we have done so far is what he would have done, daunting because her complex condition is so difficult to treat and the reality is that things have not progressed massively in 30 years. He wondered if Daisy's condition was the result of a mitochondrial disorder and therefore, as we have always suspected, a separate condition alongside her Costello Syndrome. He also confirmed that the pain she experiences is very difficult to manage, her neural pathways have been bombarded over the years so that they are very receptive to the pain she feels from her gut making treatment of the pain very very difficult, the reality is she will never be completely pain free. He felt that we now face two choices - to keep her on the immunosuppressant therapy and steroids which keep her colitis and bleeding in check but massively increase her risk of infection, particularly line infections, which can be so damaging to the liver, or remove the need for the these drugs by removing the cause, her large bowel and rectum. However this surgery would be highly risky and probably not possible as a keyhole procedure because of her previous abdominal surgeries. It's a damned if you do, damned if you don't situation however as her parents our instincts are to get Daisy off the drugs which we know from previous experience make her so ill, her recent line infection occurred a matter of weeks after starting the immunosuppressants again, however to do this we have to consent to the biggest operation of her life, with only a 50/50 guarantee of taking away the pain (but at least taking away the immunosuppression). Ultimately it does depend on whether Daisy's surgeon is prepared to take on this risk and her Gastro Consultant has promised to have this conversation with him.
So this is how we left hospital, with the prospect of a return, hopefully in the autumn allowing us a summer at home but early enough to guarantee Christmas at home too. Our family was reunited on Friday evening and thanks to our wonderful Chase Hospice, and despite some odd temperature spikes and hairy moments from Daisy, we have started to relax and live in the moment, knowing that each moment is more and more precious
The temperature spikes I blogged about in my last post were after all caused by a line infection and Daisy was very poorly for two weeks. At one point she was on five different intravenous drugs plus iv pain killers and all her usual meds. The poor nurses looking after her on a one to one basis worked non-stop and went home exhausted. The infection was not shifting and turned out to be a fungal infection which meant her hickman line had to come out. In order to prevent re-infection the best option was not to reinsert a new central line immediately but instead insert a temporary PICC line which is like a very long canula but could be used to give TPN. To do this Daisy needed the Interventional Radiology Service in GOS. A service we are always so grateful to have available to us as they have optimised the potential Daisy has for line insertions however the downside of this very specialised service is that they only operate during weekdays and between the hours of 9 -5 (with a break for lunch of course, this is the public sector!). So Daisy had to wait her turn among all the other top priority children in GOS, it is easy to become deeply frustrated with this situation until you remember this is no ordinary hospital, there are very few paediatric interventional radiology services and the children they are dealing with are the most difficult. For Daisy multiple previous line insertions means that we need the best expertise available to ensure that we do not lose ever decreasing line sites.
Eventually Daisy's line was taken out by the surgeons as she was becoming increasingly unwell and we had to rely on two very precious canulas, inserted by anaesthetists to provide fluids and iv drugs until the interventional radiology slot became available. Within hours she lost one cannula, her little veins are so scarred from previous lines and we held onto her other cannula for a day until that went too and she had to be sedated for a new one to be inserted as every procedure was becoming so traumatic. Eventually, Daisy's name came up for her slot in interventional radiology - following some timely intervention from the on call gastro consultant who questioned the ethics of continuing to keep a child whose only source of nutrition was via a central line waiting for more than 24 hours. Instead of a PICC line she ended up with a new hickman line as the delay had worked in our favour, she had been 72 hours free of plastic in her main veins and hopefully this had put paid to any lingering bugs. At the same time she had to have a new supra pubic catheter inserted, her brand new one, inserted the previous week had failed and come out and the tract where it had been inserted had closed immediately.
The new catheter insertion caused very heavy bleeding and Daisy needed 3 transfusions of FFP or fresh frozen plasma as well as a blood transfusion.
By the beginning of half term things were looking good following what we thought was the last minute drama stopping us from getting to Chase Hospice. I took the older children to my mother's house in Wales as it was the start of yet another half term holiday with Daisy in hospital , and Andy and I made plans for a hospice transfer on the Tuesday with a family reunion on the Wednesday. We even pushed the boat out and stayed in a hotel on what we thought was our last night in hospital........only to be greeting first thing on the Tuesday morning with the news that the brand new hickman line had migrated into her chest cavity and overnight Daisy's neck had swelled up and the plastic surgeons were reviewing the situation...
I'm very glad I did not see Daisy immediately after her line had moved from the jugular vein spilling TPN out under her skin, apparantly it was not a pretty site. When we saw her she was black and blue and very uncomfortable. The good news was the the Plastics team confirmed that there was no lasting tissue damage the bad new was obviously we were going to lose this precious line. So the next day Daisy went back to interventional radiology for her 8th anaesthetic and 7th central line. To say she was fed up is an understatement, she just wanted to get out of the hospital and get away. Ontop of this she was coverered in bruises caused by her poor blood clotting, a side effect of the liver damaged caused by long term TPN use. However she recovered well from this final surgery and made it known to everyone sho came near her that she wanted to go. So after 15 long and traumatic weeks we left Rainforest Ward and transferred to Chase Hospice.
We had asked our consultant at the very beginning of our hospital stay for a second opinion on Daisy's treatment, not because we had any doubts about the treatment she was receiving but as her parents it is vital that we leave no stone unturned in our quest to give Daisy the best posssible quality of life. We were very fortunate that he was able to arrange for a Professor from the US who is a world expert on Paediatric Dysmotility Disorders to come and review Daisy when he was passing through London for a couple of days en route to a conference, Meeting the Professor was both reasurring and daunting - reasurring because he confirmed to us that Daisy is looked after by the best in Europe when it comes to her condition and that everything we have done so far is what he would have done, daunting because her complex condition is so difficult to treat and the reality is that things have not progressed massively in 30 years. He wondered if Daisy's condition was the result of a mitochondrial disorder and therefore, as we have always suspected, a separate condition alongside her Costello Syndrome. He also confirmed that the pain she experiences is very difficult to manage, her neural pathways have been bombarded over the years so that they are very receptive to the pain she feels from her gut making treatment of the pain very very difficult, the reality is she will never be completely pain free. He felt that we now face two choices - to keep her on the immunosuppressant therapy and steroids which keep her colitis and bleeding in check but massively increase her risk of infection, particularly line infections, which can be so damaging to the liver, or remove the need for the these drugs by removing the cause, her large bowel and rectum. However this surgery would be highly risky and probably not possible as a keyhole procedure because of her previous abdominal surgeries. It's a damned if you do, damned if you don't situation however as her parents our instincts are to get Daisy off the drugs which we know from previous experience make her so ill, her recent line infection occurred a matter of weeks after starting the immunosuppressants again, however to do this we have to consent to the biggest operation of her life, with only a 50/50 guarantee of taking away the pain (but at least taking away the immunosuppression). Ultimately it does depend on whether Daisy's surgeon is prepared to take on this risk and her Gastro Consultant has promised to have this conversation with him.
So this is how we left hospital, with the prospect of a return, hopefully in the autumn allowing us a summer at home but early enough to guarantee Christmas at home too. Our family was reunited on Friday evening and thanks to our wonderful Chase Hospice, and despite some odd temperature spikes and hairy moments from Daisy, we have started to relax and live in the moment, knowing that each moment is more and more precious
19 May 2011
The worst hospital stay ever
I hate rollercoasters, why would anyone pay good money to scare the living daylights out of themselves all in the name of having fun....so why are we still on this non-stop rollercoaster feeling like it's Groundhog Day over and over? Week 13 in the Big Brother House and Daisy Nimmo is still doing time in her cubicle on Rainforest Ward....
Where to begin, this is truly the worst stay ever and probably because of events that have panned out since my last post. Daisy got the catheter eventually - ironically it was a perfect example of when poor communication works in our favour. I was sitting having coffee with a friend when the ward sister called me on my mobile to say that an anaesthetist had arrived and did I know anything about a catheter insertion slot that afternoon? Turns out the Urologists, who had been waiting for a "special type of catheter" for Daisy had booked her an elective surgery slot but completely forgot to tell the Gastro Team, Ward doctors or ourselves. At least the fact that Daisy has a non- functioning gut was another factor in our favour as she was good to go for surgery that afternoon.
And so the catheter was inserted and the cystoscopy showed that her bladder was inflammed as a result of repeated UTIs. Not suprisingly the catheter was not the magic cure all, in the same way as her ileostomy, it has proven to be a necessary evil throwing up more problems. Daisy experienced a lot of bladder spasms, blood and pain from the catheter and has been maxed out on pain medication, however at least we have been able to drain away the excess urine which her bladder was not able to empty and hopefully prevent any more UTIs.
The friend I had been having coffee with when we got the call for the bladder surgery is another mum who has shared a similar path to us, both at our local and at GOS, but living through the rollercoaster ride of cystic fibrosis with her daughter. We live locally to eachother and through our shared experiences and lives have become very close over the years, so I was happy but sad when I had a text from her to say that "my drinking buddy was back" this meant her daughter was being readmitted after only 5 weeks at home but at least I would have a kindred spirit with which to share a bottle of red at the end of a testing day.... As it was I was so glad I was there as later that week, and completely out of the blue, she was told that there was no more that could be done for her daughter, her lung function had deteriorated beyond help and she had only days to live. Sadly she gained her angel wings on Tuesday on the ward at GOS and is now resting peacefully and breathing easily again at our wonderful hospice, Chase, while her family come to terms with life without their little girl....
As you can imagine this has thrown up a multitude of emotions for us, sadness for a friend grieving for her daughter, grief at the loss of a beautiful little girl, fear at the possibility of our own loss.....
And in true Daisy fashion, just as my stress levels were being maxed out on the rollercoaster she throws another spanner into the works but spiking high temperatures and sepsis. For 6 days Daisy has been spiking high temperatures, vomiting and having episodes of rigour and sepsis, she is on 5 different IV antibiotics and an antifungal and not responding. Her blood cultures are negative and the experts in GOS are scratching their heads. She has five different sources of infection - a hickman line, a gastrostomy, a surgical jejenostomy, an ileostomy and a supra pubic catheter so where is the infection coming from? Correct that, actually it's four sources - the supra pubic catheter came out before a viable tract could form and she is booked for another surgical insertion next week.....
The assumption is that the infection is from the line but if we remove the line we limit her options for further line insertions. Today was spent discussing with surgeons and doctors whether or not to remove it...I am constantly being forced into making decsions which could have serious consequences - if we keep the line will the infection overwhelm her, if the line goes will we reduce options for line insertions. What if we are missing something by focusing on the line? What if it is an inflammation of her heart valves? or appendicitis? Daisy does not present in the way text books say she should, all we know is that her inflammatory markers are rising and she is not responding to antibiotics. However during the day she is still smiling and still interested in the TV and this gives me hope.
I have told the doctors that everything must now be focused on getting her into a stable and safe position so that we can transfer for a planned stay at our hospice on 29th May - we need time together as a family and this is our number one priority. This week's events have shown us that we have to seize every opportunity to be together as a family. The doctor's know this, they know that time is precious for us, and this is where I get my strength , by focusing on the most important thing, getting us all back together again.
This post is dedicated to a beautiful little girl, Alica Roa, age 10 years 5 months, who lived life to the full and to her fab mum Catherine, a true friend (& drinking buddy!) - xxxxx <3
Where to begin, this is truly the worst stay ever and probably because of events that have panned out since my last post. Daisy got the catheter eventually - ironically it was a perfect example of when poor communication works in our favour. I was sitting having coffee with a friend when the ward sister called me on my mobile to say that an anaesthetist had arrived and did I know anything about a catheter insertion slot that afternoon? Turns out the Urologists, who had been waiting for a "special type of catheter" for Daisy had booked her an elective surgery slot but completely forgot to tell the Gastro Team, Ward doctors or ourselves. At least the fact that Daisy has a non- functioning gut was another factor in our favour as she was good to go for surgery that afternoon.
And so the catheter was inserted and the cystoscopy showed that her bladder was inflammed as a result of repeated UTIs. Not suprisingly the catheter was not the magic cure all, in the same way as her ileostomy, it has proven to be a necessary evil throwing up more problems. Daisy experienced a lot of bladder spasms, blood and pain from the catheter and has been maxed out on pain medication, however at least we have been able to drain away the excess urine which her bladder was not able to empty and hopefully prevent any more UTIs.
The friend I had been having coffee with when we got the call for the bladder surgery is another mum who has shared a similar path to us, both at our local and at GOS, but living through the rollercoaster ride of cystic fibrosis with her daughter. We live locally to eachother and through our shared experiences and lives have become very close over the years, so I was happy but sad when I had a text from her to say that "my drinking buddy was back" this meant her daughter was being readmitted after only 5 weeks at home but at least I would have a kindred spirit with which to share a bottle of red at the end of a testing day.... As it was I was so glad I was there as later that week, and completely out of the blue, she was told that there was no more that could be done for her daughter, her lung function had deteriorated beyond help and she had only days to live. Sadly she gained her angel wings on Tuesday on the ward at GOS and is now resting peacefully and breathing easily again at our wonderful hospice, Chase, while her family come to terms with life without their little girl....
As you can imagine this has thrown up a multitude of emotions for us, sadness for a friend grieving for her daughter, grief at the loss of a beautiful little girl, fear at the possibility of our own loss.....
And in true Daisy fashion, just as my stress levels were being maxed out on the rollercoaster she throws another spanner into the works but spiking high temperatures and sepsis. For 6 days Daisy has been spiking high temperatures, vomiting and having episodes of rigour and sepsis, she is on 5 different IV antibiotics and an antifungal and not responding. Her blood cultures are negative and the experts in GOS are scratching their heads. She has five different sources of infection - a hickman line, a gastrostomy, a surgical jejenostomy, an ileostomy and a supra pubic catheter so where is the infection coming from? Correct that, actually it's four sources - the supra pubic catheter came out before a viable tract could form and she is booked for another surgical insertion next week.....
The assumption is that the infection is from the line but if we remove the line we limit her options for further line insertions. Today was spent discussing with surgeons and doctors whether or not to remove it...I am constantly being forced into making decsions which could have serious consequences - if we keep the line will the infection overwhelm her, if the line goes will we reduce options for line insertions. What if we are missing something by focusing on the line? What if it is an inflammation of her heart valves? or appendicitis? Daisy does not present in the way text books say she should, all we know is that her inflammatory markers are rising and she is not responding to antibiotics. However during the day she is still smiling and still interested in the TV and this gives me hope.
I have told the doctors that everything must now be focused on getting her into a stable and safe position so that we can transfer for a planned stay at our hospice on 29th May - we need time together as a family and this is our number one priority. This week's events have shown us that we have to seize every opportunity to be together as a family. The doctor's know this, they know that time is precious for us, and this is where I get my strength , by focusing on the most important thing, getting us all back together again.
This post is dedicated to a beautiful little girl, Alica Roa, age 10 years 5 months, who lived life to the full and to her fab mum Catherine, a true friend (& drinking buddy!) - xxxxx <3
28 April 2011
Dear Jane.........
This post has been sitting in edit mode on my laptop for a few weeks now, waiting for me to tweak it and post it, I find myself sitting in a tiny room in the parent's accomodation wing at 3.55am in the morning, unable to sleep yet again and now I find time to finish this post and update.....sorry for the odd timeline but it's just impossible to write during the day with Daisy, I am either spending time with her or talking to the various doctors and professionals who stream into and out of our lives over the week. Weekends are for family visits, and night-time is for mulling over what has happened during the day or swapping shifts with Andy................
A week is a long time in the world I find myself inhabiting, and just one week on from my last post it feels like we have moved forward at nano-speed in all areas of our life. I came home for the evening on 5 April and Andy was staying at Great Ormond Street. At 5.30pm he phoned me to say that one of the Gastro Consultants had come to see him to say that Daisy would not be able to have a slot for the surgery to place a surgical jejenostomy until some time during May. This was going to condemn her to at least another four weeks in her cubicle, attached to intravenous pain relief, with no feed and TPN running for 24 hours a day....clearly this was not acceptable, what had gone so wrong that we found ourselves in a situation where our childs needs were no longer seen as urgent....
Andy came home on the last tube and we fired up the laptop, opened a bottle of wine and began to write:-
Dear Jane Collins (the Chief Executive of Great Ormond Street Hospital) ...We are writing to register our formal complaint that regrettably after a generally positive 6+ year relationship with Great Ormond Street Hospital we feel that our daughter, Daisy’s care and clinical management is substandard and not supporting the objective of improving the quality of her life...
We described, over the following four pages, the impact of not having a surgical jejenostomy was having on her life and our family life. How basic processes in communication and patient advocacy had left us in a situation where our family would continue to sit waiting for things to happen for at least another four weeks....four weeks where Daisy was condemned to life on TPN for 24 hours a day and at constant risk of developing infections.
Within 12 hours our world changed, people we had never met before appeared in Daisy's room and most importantly the surgeon who had performed her ileostomy last year appeared in her room to tell us that she had been put on the emergency list for surgery the next day.... by Thursday evening Daisy had her surgical jejenostomy, technically called a roux en y jejenostomy and although she was not coping too well with her breathing post anaesthetic was back on the ward and we could start to think about life away from hospital again...
We are now 2 weeks post surgery and Andy and I have mulled over why did it take a letter to be the catalyst to action. We are so fortunate to be able to articulate our concerns and to be able to stand back and use our experience as business professionals to look objectively at why processes had failed to support the overall objective of the child first and always. We have never ever criticised Great Ormond Street Hospital and never will - our daughter owes her life to the care and expertise of the many people we come across every time we come to this hospital. However some of the basics of communication and ownership of issues are so clearly missing in some areas leading to situations where children wait for procedures and plans to happen. What was missing in Daisy's case was a clear sense of ownership of the problem and that word which we have used so much recently, advocacy, for her needs. As her parents we trust that people are fighting her corner when she needs things to happen, in many cases this does happen and we know of some brilliant people who are constantly fighting Daisy's corner. But when your child is so complex and teams rotate on a weekly basis who is making sure that things are still happening when they should?
Our letter of complaint has become a catalyst for a root/cause/analysis of this situation - parents of complex children need to be parents, we are advocates too but we trust that the health professionals are then making sure that they are representing our child's needs among all the other priority children. Andy and I did not want our complaint to be just about dealing with our situation, we wanted it to change things for the better, to look at where things have gone wrong and make a difference so that situations like ours don't happen.
We now have over six years of experience of dealing with the machine that is the NHS, over the years our ability to deal with this has grown and evolved. We have learned that we are essentially dealing with a huge, supertanker set in it's ways, but we have also learned that by finding the right people who can help you can slowly find a voice which people will listen too. Whenever people ask me how to manage a situation I always direct them to the Patient Advice and Liaison Service (Pals) - every trust has one. We have a long relationship with the Pals team at GOSH, to the point that we always pop our heads around the door, even to say that things are going well this stay. Often I will go in and ask them to "liaise on our behalf" - sometimes a carefully worded email from Pals on our behalf is all it takes. The Pals team know our situation with Daisy and know us, we have only ever used them when things are becoming difficult and are always clear in knowing what we want as an outcome.
We know we are going to continue to have a long relationship with GOS, many things have changed for the better - the care Daisy receives on Rainforest ward is fantastic, so much better than the early days when we used to come to the hospital, things can improve and we have always taken the view in every aspect of our lives that you can sit and rant about it or you can do something yourself to improve things. Years of diplomacy and tact pay dividends when you become viewed as parents who have views worth listening to...
So now Daisy has her jejenostomy at last and we are working towards increasing her milk feeds and reducing her TPN down from 24 hours so that she has time off. We are also making more and more progress in managing her pain and identifying where it is coming from. For years both Andy and I have been concerned that her pain is not just from her colon but also from her bladder. Eventually the gastro team organised urodynamics testing which has identified another source for her frequent infections and pain - Daisy's bladder does not empty properly, this means that there is always a residue of urine left in it, explaining the reason behind the frequent UTI's and probably also explaining why she experiences so much pain at night as her bladder fills, goes into spasm and because of the UTI's is chronically inflammed. The solution is to help it to empty. The team here would like her to have a vesicostomy, yet another stoma, this time in her bladder so that excess urine could drain into a nappy. Andy and I have not made that mind shift yet for another big bit of surgery or also to condemn Daisy to a life of incontinence when most of the mobile children with Daisy's condition do not spend their lives wearing nappies. The second option is to fit a supra-pubic catheter which would allow us to drain the excess urine from the bladder. This involves another general anaesthetic, it's seen as a medium term solution and in the longer term she would need surgery to provide a more permanent solution to her problems with her bladder.
So at least we have a lot more answers on why Daisy gets so much pain - it is from several sources, the diversion colitis, her dysmotile small bowel and, not suprisingly, a neuropathic bladder. So you would think that given she is now doing so well establishing her milk feed, reducing hours on TPN and we have a good protocol for pain management that surgery to fit the supra-pubic catheter would be prioritised and we could move forward in our plan to transition from GOS to our hospice for respite before going home....
Well in a remarkable moment of deja vu I received a phone call from Andy tonight (it's always when I am at home and he is doing a shift at the hospital!) - at 5.50pm, the Urology Registrar came to visit Daisy to say that it would be likely that it would be a month before they could do the surgery......somehow I think we have been through this all before....however we have some good people who I will speak to tomorrow and once again in my role as Daisy's advocate point out that sitting in a hospital cubicle, at risk of infection (she is just recovering from a bout of shingles) while we wait for a procedure which will enable her to get home and live her life is not acceptable...
And so that is why I am finishing my blog in the early hours of the morning as I run through the conversations I will need to have yet again later today. It's not my daughter's medical problems that cause me sleepless nights, these I can deal with, she is strong and a fighter....it's the fighting and battling I have to do on her behalf to get her the things she needs to live her life, that's what saps my strength and energy.
Better close down the laptop now, big day ahead, fingers crossed the next post will be a positive one!
A week is a long time in the world I find myself inhabiting, and just one week on from my last post it feels like we have moved forward at nano-speed in all areas of our life. I came home for the evening on 5 April and Andy was staying at Great Ormond Street. At 5.30pm he phoned me to say that one of the Gastro Consultants had come to see him to say that Daisy would not be able to have a slot for the surgery to place a surgical jejenostomy until some time during May. This was going to condemn her to at least another four weeks in her cubicle, attached to intravenous pain relief, with no feed and TPN running for 24 hours a day....clearly this was not acceptable, what had gone so wrong that we found ourselves in a situation where our childs needs were no longer seen as urgent....
Andy came home on the last tube and we fired up the laptop, opened a bottle of wine and began to write:-
Dear Jane Collins (the Chief Executive of Great Ormond Street Hospital) ...We are writing to register our formal complaint that regrettably after a generally positive 6+ year relationship with Great Ormond Street Hospital we feel that our daughter, Daisy’s care and clinical management is substandard and not supporting the objective of improving the quality of her life...
We described, over the following four pages, the impact of not having a surgical jejenostomy was having on her life and our family life. How basic processes in communication and patient advocacy had left us in a situation where our family would continue to sit waiting for things to happen for at least another four weeks....four weeks where Daisy was condemned to life on TPN for 24 hours a day and at constant risk of developing infections.
Within 12 hours our world changed, people we had never met before appeared in Daisy's room and most importantly the surgeon who had performed her ileostomy last year appeared in her room to tell us that she had been put on the emergency list for surgery the next day.... by Thursday evening Daisy had her surgical jejenostomy, technically called a roux en y jejenostomy and although she was not coping too well with her breathing post anaesthetic was back on the ward and we could start to think about life away from hospital again...
We are now 2 weeks post surgery and Andy and I have mulled over why did it take a letter to be the catalyst to action. We are so fortunate to be able to articulate our concerns and to be able to stand back and use our experience as business professionals to look objectively at why processes had failed to support the overall objective of the child first and always. We have never ever criticised Great Ormond Street Hospital and never will - our daughter owes her life to the care and expertise of the many people we come across every time we come to this hospital. However some of the basics of communication and ownership of issues are so clearly missing in some areas leading to situations where children wait for procedures and plans to happen. What was missing in Daisy's case was a clear sense of ownership of the problem and that word which we have used so much recently, advocacy, for her needs. As her parents we trust that people are fighting her corner when she needs things to happen, in many cases this does happen and we know of some brilliant people who are constantly fighting Daisy's corner. But when your child is so complex and teams rotate on a weekly basis who is making sure that things are still happening when they should?
Our letter of complaint has become a catalyst for a root/cause/analysis of this situation - parents of complex children need to be parents, we are advocates too but we trust that the health professionals are then making sure that they are representing our child's needs among all the other priority children. Andy and I did not want our complaint to be just about dealing with our situation, we wanted it to change things for the better, to look at where things have gone wrong and make a difference so that situations like ours don't happen.
We now have over six years of experience of dealing with the machine that is the NHS, over the years our ability to deal with this has grown and evolved. We have learned that we are essentially dealing with a huge, supertanker set in it's ways, but we have also learned that by finding the right people who can help you can slowly find a voice which people will listen too. Whenever people ask me how to manage a situation I always direct them to the Patient Advice and Liaison Service (Pals) - every trust has one. We have a long relationship with the Pals team at GOSH, to the point that we always pop our heads around the door, even to say that things are going well this stay. Often I will go in and ask them to "liaise on our behalf" - sometimes a carefully worded email from Pals on our behalf is all it takes. The Pals team know our situation with Daisy and know us, we have only ever used them when things are becoming difficult and are always clear in knowing what we want as an outcome.
We know we are going to continue to have a long relationship with GOS, many things have changed for the better - the care Daisy receives on Rainforest ward is fantastic, so much better than the early days when we used to come to the hospital, things can improve and we have always taken the view in every aspect of our lives that you can sit and rant about it or you can do something yourself to improve things. Years of diplomacy and tact pay dividends when you become viewed as parents who have views worth listening to...
So now Daisy has her jejenostomy at last and we are working towards increasing her milk feeds and reducing her TPN down from 24 hours so that she has time off. We are also making more and more progress in managing her pain and identifying where it is coming from. For years both Andy and I have been concerned that her pain is not just from her colon but also from her bladder. Eventually the gastro team organised urodynamics testing which has identified another source for her frequent infections and pain - Daisy's bladder does not empty properly, this means that there is always a residue of urine left in it, explaining the reason behind the frequent UTI's and probably also explaining why she experiences so much pain at night as her bladder fills, goes into spasm and because of the UTI's is chronically inflammed. The solution is to help it to empty. The team here would like her to have a vesicostomy, yet another stoma, this time in her bladder so that excess urine could drain into a nappy. Andy and I have not made that mind shift yet for another big bit of surgery or also to condemn Daisy to a life of incontinence when most of the mobile children with Daisy's condition do not spend their lives wearing nappies. The second option is to fit a supra-pubic catheter which would allow us to drain the excess urine from the bladder. This involves another general anaesthetic, it's seen as a medium term solution and in the longer term she would need surgery to provide a more permanent solution to her problems with her bladder.
So at least we have a lot more answers on why Daisy gets so much pain - it is from several sources, the diversion colitis, her dysmotile small bowel and, not suprisingly, a neuropathic bladder. So you would think that given she is now doing so well establishing her milk feed, reducing hours on TPN and we have a good protocol for pain management that surgery to fit the supra-pubic catheter would be prioritised and we could move forward in our plan to transition from GOS to our hospice for respite before going home....
Well in a remarkable moment of deja vu I received a phone call from Andy tonight (it's always when I am at home and he is doing a shift at the hospital!) - at 5.50pm, the Urology Registrar came to visit Daisy to say that it would be likely that it would be a month before they could do the surgery......somehow I think we have been through this all before....however we have some good people who I will speak to tomorrow and once again in my role as Daisy's advocate point out that sitting in a hospital cubicle, at risk of infection (she is just recovering from a bout of shingles) while we wait for a procedure which will enable her to get home and live her life is not acceptable...
And so that is why I am finishing my blog in the early hours of the morning as I run through the conversations I will need to have yet again later today. It's not my daughter's medical problems that cause me sleepless nights, these I can deal with, she is strong and a fighter....it's the fighting and battling I have to do on her behalf to get her the things she needs to live her life, that's what saps my strength and energy.
Better close down the laptop now, big day ahead, fingers crossed the next post will be a positive one!
4 April 2011
My song for Daisy
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