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
19 May 2011
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
3 April 2011
Happy Mother's Day
Today was Mother's Day in the UK. Did any of us think when we became mother's that the journey would take us to where we are now? I never in a million years imagined that I would be sat, as I am now, in a tiny single bedroom in the heart of London, writing about my sick child, lying in a cot in one of the world's best children's hospitals next door....
I also never thought that I would have to find the time to attend meetings to discuss my eldest son and the impact his high funcionting autism is having on our lives and his life...
Do any of us really know what life has in store for us? Out of everyone in my life I though my dad would live for ever, not cruelly snatched away by cancer at 61. I thought I would be still building my marketing career, Andy probably thought he would still be an actor... If anything, life with Daisy has taught us that you have to accept what you have, live for the moment and go with the flow. As I look around I wonder what is the perfect life, the perfect family? It strikes me that no-one has this rose-tinted existence, each person I come across has issues, problems, battles.... so while I enjoyed Mother's day today with one child still in hospital, one very stressed because she is in hospital, one about to hit adolescence and wanting her mum to be around more and one who is growing up far too quickly, I realised that I can crave the ideal family or embrace what I have - and for the record I love every dysfunctional bit of my family, in my eyes - gene mutations, hormones, autism - everything - they are perfect because they are individual and special and reflect Andy and I. Anyone who knows us well know that life was never going to follow a conventional path so I guess the adage "you are only given what you can handle" must hold true for us - although there are moments when I do think, OK, give us a break....
Which, inevitably brings me on to our wonderful youngest child, Daisy. Tomorrow we enter week 7 of our current stay at Great Ormond Street, and where are we? - well since I last updated we have had an multi-disciplinary meeting, and I had the honour of being invited in for the last 30 minutes of it (the first 30 minutes were for health professionals only to discuss my child). The agreement was that colectomy was deemed too risky but a surgical jejenostomy, although it would probably result in a step backward initially, would be OK. It was also agreed that an MRI to rule out malignancy was a priority. After much negotiating by the gastro team the MRI (under general anaesthetic)will happen tomorrow, although we still do not have a date for the surgical jejenostomy...
Of course, true to form, and probably knowing how important this MRI is tomorrow, Daisy has decided to spike a temperature and have problems with fluid balance and fast heart rate...the anaesthetist is going to love her! I just hope it doesn't get cancelled, we need to know where this pain is coming from. She has been on 24 hour TPN for over 5 weeks and a ketamine infusion for the same length of time. This is no way to live. Everything has to be focused on getting her home, but getting her home in a way that Andy and I can manage her. We are hoping when she eventually does get the surgical jejenostomy we can get a good pain management regimen in place and go home via our wonderful hospice at Chase. It is so long, once again, that we have been a family together, at least time at Chase will allow us time to adjust and be together before we go home. In the meantime, I just need to focus on getting through tomorrow, I don't want the MRI to show anything nasty but at the same time we need to know why she is in such pain and why it is so localised and of course ontop of that I just hope she isn't brewing anything nasty which is going to affect whether she will even be anaesthetised..
Hey ho - life goes on, I will take it each day at a time, so in the meantime - Happy Mother's day xxx
I also never thought that I would have to find the time to attend meetings to discuss my eldest son and the impact his high funcionting autism is having on our lives and his life...
Do any of us really know what life has in store for us? Out of everyone in my life I though my dad would live for ever, not cruelly snatched away by cancer at 61. I thought I would be still building my marketing career, Andy probably thought he would still be an actor... If anything, life with Daisy has taught us that you have to accept what you have, live for the moment and go with the flow. As I look around I wonder what is the perfect life, the perfect family? It strikes me that no-one has this rose-tinted existence, each person I come across has issues, problems, battles.... so while I enjoyed Mother's day today with one child still in hospital, one very stressed because she is in hospital, one about to hit adolescence and wanting her mum to be around more and one who is growing up far too quickly, I realised that I can crave the ideal family or embrace what I have - and for the record I love every dysfunctional bit of my family, in my eyes - gene mutations, hormones, autism - everything - they are perfect because they are individual and special and reflect Andy and I. Anyone who knows us well know that life was never going to follow a conventional path so I guess the adage "you are only given what you can handle" must hold true for us - although there are moments when I do think, OK, give us a break....
Which, inevitably brings me on to our wonderful youngest child, Daisy. Tomorrow we enter week 7 of our current stay at Great Ormond Street, and where are we? - well since I last updated we have had an multi-disciplinary meeting, and I had the honour of being invited in for the last 30 minutes of it (the first 30 minutes were for health professionals only to discuss my child). The agreement was that colectomy was deemed too risky but a surgical jejenostomy, although it would probably result in a step backward initially, would be OK. It was also agreed that an MRI to rule out malignancy was a priority. After much negotiating by the gastro team the MRI (under general anaesthetic)will happen tomorrow, although we still do not have a date for the surgical jejenostomy...
Of course, true to form, and probably knowing how important this MRI is tomorrow, Daisy has decided to spike a temperature and have problems with fluid balance and fast heart rate...the anaesthetist is going to love her! I just hope it doesn't get cancelled, we need to know where this pain is coming from. She has been on 24 hour TPN for over 5 weeks and a ketamine infusion for the same length of time. This is no way to live. Everything has to be focused on getting her home, but getting her home in a way that Andy and I can manage her. We are hoping when she eventually does get the surgical jejenostomy we can get a good pain management regimen in place and go home via our wonderful hospice at Chase. It is so long, once again, that we have been a family together, at least time at Chase will allow us time to adjust and be together before we go home. In the meantime, I just need to focus on getting through tomorrow, I don't want the MRI to show anything nasty but at the same time we need to know why she is in such pain and why it is so localised and of course ontop of that I just hope she isn't brewing anything nasty which is going to affect whether she will even be anaesthetised..
Hey ho - life goes on, I will take it each day at a time, so in the meantime - Happy Mother's day xxx
15 March 2011
Still here, still searching for answers.....
So much has happened between the last post and now, it's difficult to know where to begin, and to top that I am sleep deprived as no suprises we are still in GOS and Daisy is still in pain at night...
Not long after the last post, Daisy began to lose significant amounts of blood from her bottom, confirming my suspicion that a crisis was looming, I was relieved that she was an inpatient on Rainforest and not waiting at our local hospital for a bed to be available...
The endoscopy had been rescheduled because of Daisy's temperature and infection so eventually she was scoped a week later. Not suprisingly the resuts revealed a significant area of inflammation in her large bowel and explained the heavy blood loss. As a result of the scopes Daisy's pain management requirements went up again and she was stated on an NCA pump (nurse controlled analgesia) of ketamine. That was the beginning of our battle to get ontop of Daisy's pain, night times continue to be worse and worse and her analgesia requirements have been going up and up. Morphine was added to the NCA but in typical Daisy fashion she had a really bad reaction to it, despite tolerating IV morphine before. In fact her reaction was so bad I think that day has gone down as one of our worst - she was screaming in pain, inconsolable and desparately uncomfortable as her bowel stopped working for 10 hours and instead of the usual litre of so of output she lost about 10 mls of green bile all day. The pain team and palliative care team were at a loss as to what was going on and although she improved once the IV morphine was stopped she is still continuing to have prolonged episodes of pain at night requiring increasing doses of iv ketamine as well as a range of other intravenous analgesics. The gastro team have called in the oncology team as Costello Syndrome carries a significantly enhanced risk of malignancy and we need to rule this out as a cause of her acute pain, they just don't feel that the colitis, which is being treated with iv steroids, could be the sole cause of her pain.
So where are we now? Well clearly this stay is now in it's fourth week and the weeks stretch ahead of us, when Daisy first had an infection on arriving I predicted that we would not be home by Easter, now I'm worried if that is a bit optimistic. The priority is for Daisy to have an MRI under general anaesthetic in order to rule out tumours causing her pain. The next step is for a decision to be made about whether or not to remove her colon. We don't believe that the colitis alone is the sole source of her pain but it is the source of discomfort and possibly the reason for her frequent high temperatures and infections. It is inflammed at the moment but the bleeding has decreased following a course of high-dose steroids (pulse steroids), however our arguement is what happens if it flares up again and Daisy is not in hospital or able to access the pain killing analgesia that can only be administered in a high dependency setting like Rainforest ward. However the solution is not as straightforward as removing her colon, in order to eliminate any risk of further inflammation and problems her large bowel and rectum would have to be removed, this is major and radical surgery. We know the colon doesn't work and is not performing any useful function while it is defunctioned however is it worth the massive risk to remove it? All this will be discussed at a meeting we hope is being organised between ourselves, gastro team members together with members of the palliative team and other specialities, where hopefully we can come up with a longer term plan for Daisy. On top of all of this we have asked for a Urology review and Endocrine review. We are concerned that maybe a previously undiagnosed bladder/urological abnormality could be contributing to her problems, this is not unknown in Costello Syndrome. In addition we know that while still within normal limits, Daisy's bone density has decreased dramatically and we need the endocrine to review this to ensure that she is not moving into the territory where she is developing osteopenia, the precursor to osteoporosis.
As always our lives are in the hands of others, all we can do is constantly remind whoever will listen that we do not have the luxury to sit and wait while meetings are planned and procedures booked, we need Daisy home and we need these things to happen for us to be home. If the decision is made to perform surgery then this will delay our getting home even further hence the need to make that decision asap, and I don't even want to go down the road of thinking about what potentially could show up during her MRI, we have faced this worry before and it has always proven unfounded so I just keep reminding myself that all the team want to do is eliminate the possibility of cancer because her risk factors are so much higher than a typical child.
Again we feel disempowered - while the wonderful staff do everything possible to make Daisy comfortable with the extreme pain she is experiencing mainly at night, we wait for meetings to be set up and investigations to be scheduled, knowing that our urgency needs to be weighed against the urgency of all the other complicated children who eventually find themselves in this hospital and we just have to hope (with a little bit of tactical cajoling) that the people responsible for being ontop of these things are doing their jobs.
Tonight Daisy is yet again on IV antibiotics, having spiked a temperature yesterday, again it looks like a UTI, confirming the need to get this investigated properly. Her ketamine is switched up to its night time dose to help manage the pain alongside regular extra boluses of the drug if required, she has received her last dose of IV paracetomol for the day and in a moment her nurse will come in with another one of her IV anti spasmodic meds...
I have phoned home to check that the online grocery order I placed on Monday has arrived and there is enough food to keep everyone happy. The children are asking when I will be home and I think I will sneak home tomorrow night so that I can go along to an important hospital appointment for Theo together with Andy first thing Thursday morning and return to the hospital in the afternoon. It means I'm going to have to leave Daisy but the other children need to see a bit of me for a while. I just hope that by the end of this week we have something more resembling a plan and a firm way forward, already in nearly four weeks Daisy has thrown a few too many spanners in the works so the sooner we move forward the sooner we can think about getting her home and getting on with our lives....
Not long after the last post, Daisy began to lose significant amounts of blood from her bottom, confirming my suspicion that a crisis was looming, I was relieved that she was an inpatient on Rainforest and not waiting at our local hospital for a bed to be available...
The endoscopy had been rescheduled because of Daisy's temperature and infection so eventually she was scoped a week later. Not suprisingly the resuts revealed a significant area of inflammation in her large bowel and explained the heavy blood loss. As a result of the scopes Daisy's pain management requirements went up again and she was stated on an NCA pump (nurse controlled analgesia) of ketamine. That was the beginning of our battle to get ontop of Daisy's pain, night times continue to be worse and worse and her analgesia requirements have been going up and up. Morphine was added to the NCA but in typical Daisy fashion she had a really bad reaction to it, despite tolerating IV morphine before. In fact her reaction was so bad I think that day has gone down as one of our worst - she was screaming in pain, inconsolable and desparately uncomfortable as her bowel stopped working for 10 hours and instead of the usual litre of so of output she lost about 10 mls of green bile all day. The pain team and palliative care team were at a loss as to what was going on and although she improved once the IV morphine was stopped she is still continuing to have prolonged episodes of pain at night requiring increasing doses of iv ketamine as well as a range of other intravenous analgesics. The gastro team have called in the oncology team as Costello Syndrome carries a significantly enhanced risk of malignancy and we need to rule this out as a cause of her acute pain, they just don't feel that the colitis, which is being treated with iv steroids, could be the sole cause of her pain.
So where are we now? Well clearly this stay is now in it's fourth week and the weeks stretch ahead of us, when Daisy first had an infection on arriving I predicted that we would not be home by Easter, now I'm worried if that is a bit optimistic. The priority is for Daisy to have an MRI under general anaesthetic in order to rule out tumours causing her pain. The next step is for a decision to be made about whether or not to remove her colon. We don't believe that the colitis alone is the sole source of her pain but it is the source of discomfort and possibly the reason for her frequent high temperatures and infections. It is inflammed at the moment but the bleeding has decreased following a course of high-dose steroids (pulse steroids), however our arguement is what happens if it flares up again and Daisy is not in hospital or able to access the pain killing analgesia that can only be administered in a high dependency setting like Rainforest ward. However the solution is not as straightforward as removing her colon, in order to eliminate any risk of further inflammation and problems her large bowel and rectum would have to be removed, this is major and radical surgery. We know the colon doesn't work and is not performing any useful function while it is defunctioned however is it worth the massive risk to remove it? All this will be discussed at a meeting we hope is being organised between ourselves, gastro team members together with members of the palliative team and other specialities, where hopefully we can come up with a longer term plan for Daisy. On top of all of this we have asked for a Urology review and Endocrine review. We are concerned that maybe a previously undiagnosed bladder/urological abnormality could be contributing to her problems, this is not unknown in Costello Syndrome. In addition we know that while still within normal limits, Daisy's bone density has decreased dramatically and we need the endocrine to review this to ensure that she is not moving into the territory where she is developing osteopenia, the precursor to osteoporosis.
As always our lives are in the hands of others, all we can do is constantly remind whoever will listen that we do not have the luxury to sit and wait while meetings are planned and procedures booked, we need Daisy home and we need these things to happen for us to be home. If the decision is made to perform surgery then this will delay our getting home even further hence the need to make that decision asap, and I don't even want to go down the road of thinking about what potentially could show up during her MRI, we have faced this worry before and it has always proven unfounded so I just keep reminding myself that all the team want to do is eliminate the possibility of cancer because her risk factors are so much higher than a typical child.
Again we feel disempowered - while the wonderful staff do everything possible to make Daisy comfortable with the extreme pain she is experiencing mainly at night, we wait for meetings to be set up and investigations to be scheduled, knowing that our urgency needs to be weighed against the urgency of all the other complicated children who eventually find themselves in this hospital and we just have to hope (with a little bit of tactical cajoling) that the people responsible for being ontop of these things are doing their jobs.
Tonight Daisy is yet again on IV antibiotics, having spiked a temperature yesterday, again it looks like a UTI, confirming the need to get this investigated properly. Her ketamine is switched up to its night time dose to help manage the pain alongside regular extra boluses of the drug if required, she has received her last dose of IV paracetomol for the day and in a moment her nurse will come in with another one of her IV anti spasmodic meds...
I have phoned home to check that the online grocery order I placed on Monday has arrived and there is enough food to keep everyone happy. The children are asking when I will be home and I think I will sneak home tomorrow night so that I can go along to an important hospital appointment for Theo together with Andy first thing Thursday morning and return to the hospital in the afternoon. It means I'm going to have to leave Daisy but the other children need to see a bit of me for a while. I just hope that by the end of this week we have something more resembling a plan and a firm way forward, already in nearly four weeks Daisy has thrown a few too many spanners in the works so the sooner we move forward the sooner we can think about getting her home and getting on with our lives....
22 February 2011
The Planned Admission
Well here we are back in our favourite Bloomsbury residence - Rainforest Ward. This is the planned admission we have been waiting for, the one where maybe we will have even more answers and perhaps a plan for more surgery. This has been planned to be the week when Daisy will have a set of scopes to look at her bowel at both ends and she will also have an manometry to look at the function of the small bowel, this hopefully will help the doctors plan how to manage and treat the high losses she gets from her ileostomy and the pain she experiences at night.......
Over the past few weeks her night time pain has just been getting worse and worse, with our symptom care team we have thrown more and more drugs at her, with the result that I am convinced that the reason she is so happy in the morning is that she is high as a kite. Sadly though the drugs are not working on her pain and all we are doing is managing the symptoms and not the cause, which I am convinced is coming from her defunctioned large bowel. Our hope is that this admission will convince the doctors to proceed with putting in place plans to remove this dysfunctional colon, which biopsies have shown will never work, in the hope that it will help with her pain. However as always with Daisy the best laid plans go wrong, and no-one, least of all the nurses and doctors on Rainforest Ward were suprised when Daisy spiked a temperature last night and became unwell....this has resulted in the plans for this week of tests and two anaesthetics have had to be put on hold, IV antibiotics have been started and Daisy's pain medication has been ramped up again.
To add to everything, the trans-gastric jejenal tube which delivers meds and some milk feeds into the top part of her bowel was accidentally pulled out during her last hospice visit so we are limited to just TPN for nutrition and whatever water she is able to take orally during the day - we had also hoped to have a new transgastric jej placed under anaesthetic during this admission. It is a relief in some ways, at least she was in hospital, and most importantly in the specialist hospital, when she became unwell. I don't need to convince the medical staff how much pain she can experience at night, they know, but it is always good for them to see it so that plans for management and treatment can be formed. I am convinced this is the crisis that we have been waiting for, the pain meds have just been going up and up and while we just keep throwing more and more drugs at her we are not getting to the root cause. My instinct is that her colon has now flared up and is inflammed again, the discharge from her rear end indicates this and she constantly localises pain in the area of her colon, she is really tender to touch there at the moment.
I am almost hoping that now she is in the decision will be finalised about removing her colon, in my mind I am set for a long stay with some sort of surgical outcome. She could also have a surgically placed jejenostomy at the same time as the colectomy surgery which would save further anaesthetics if it came out again as I could replace this type of tube once I was trained. Obviously the downside to all of this is that we are talking about big surgery again with all the risks of anaesthetic, infection, bleeding, Daisy does not recover well from anaesthetic or surgery but it may give her the chance of being out of pain at night and also we would avoid yet another long summer holiday in hospital, something I want to avoid at all costs. The reality is, however, that none of us can go on with the amount of pain Daisy experiences at night, often she has a bruise on her forehead where she has banged it in frustration against the side of the cot in pain, she is worn out and we are worn out and it is no way for a family to live.
In the meantime we have to wait for blood culture results to see if the infection is in her blood stream and also a plan to reschedule her upper and lower endoscopies, manometry and jej tube replacement and then a conversation about the results and a probably colectomy.. nothing is ever done by halves in Daisy's world....
Of course the icing on the cake is that it is half term - yet another school holiday where the family is torn apart. Andy has taken the older three to France for a few days, at least they are all getting some sea air and I look forward to the wine and cheese they will bring back, my hope is that I will be able to take the older children at least to France for part of the Easter holidays, who knows, maybe Daisy will be well enough to join the whole family? Our biggest wish this year is to have the summer holidays together, and we will make this happen whatever is thrown in our path as a third year of summertime spent apart is just not an option, the children are growing up too quickly for this and we need to be together.
Which brings me to another battle we have been fighting on behalf of one of our other children. I have discussed blogging this with Theo and he is comfortable letting people know as he wants the world to know there is a reason for what can sometimes appear to be his odd behaviour. Theo has Aspergers Syndrome, this is something we had suspected for a long time but a combination of worries about Daisy, hope that it was just a phase or down to anxiety about our situation and a smattering of middle class denial has meant that Theo has only recently had a confirmed diagnosis. The signs were there since early childhood and I am grateful that many of the things that make Theo the amazing, intelligent, funny person he is are in some ways due to the fact he has Aspergers, he is not defined by the syndrome but it is part of who he is. Unfortunately puberty can really exacerbate some of the negative elements of Aspergers and this has resulted in problems in school and home, especially with anxiety and meltdowns. We are now working with our local authority to get Theo a statement of Special Education Needs in order to get him the support he needs in school (things like laptops, extra time in exams), we also are working with an Occupational Therapist, who just happened to be Daisy's first OT, to address some of Theo's sensory issues which can come with the diagnosis - he cannot cope with bright lights or too much noise and has to have time out breaks when he has sensory overload, this has caused him problems in school before where he has unconciously stood up and walked around the class in order to "get his head together" in the middle of a lesson, or rocked back and fore on his chair. He has been suffering from bad migraines for a while now and much of this is down to being overloaded. Andy and I have had a very steep learning curve as we try to understand Aspergers and how best to help Theo, again we have had to become experts very quickly in order to support and advocate for our son. In many ways it has given us a sense of relief, there is a reason for the meltdowns and our parenting style has had to adjust to parenting a son with Aspergers, breaking down instructions is one example, making sure that we stick to plans and he knows them is another.
Of course sticking to plans is not possible when you have a child like Daisy - once again she is in hospital and the plan has gone pear shaped, this makes Theo anxious and we have to manage his anxieties and stress. And on top of all of this we have two "typical" children in the middle who need time and love and care - all of this is a full time, full on job!
Again, Andy and I wonder how we cope, I guess we are eternal optimists, we have our unwritten rule whereby if one of us is down the other is not allowed to be, and we desparately try and make time for eachother. On Sunday evening we have a babysitter looking after the older three while Andy comes out to the hospital and we will pop out for a few cheeky glasses of red. We also have another project in the pipeline as we eagerly await the arrival Tulip, our vintage, orange VW camper van (called Tulip as she is originally from Amsterdam). We are hoping to have some fun family days out in Tulip and Andy is also looking forward to taking the boys to some campervan meets and festivals. In fact we are planning in our eternally optimistic way to take Daisy to her first music festival in July. We hope to meet up with old friends at Guilfest, Andy will camp with the boys in the van and as our hospice is not too far away Daisy, Xanthe and I will have a bit more luxury staying at Chase for the weekend!
I have set a mental deadline of Easter for this latest glitch to be sorted, I want the summer months to be about family time and fun - barbeques, day trips, cycling - once again, here's keeping everything crossed...
Over the past few weeks her night time pain has just been getting worse and worse, with our symptom care team we have thrown more and more drugs at her, with the result that I am convinced that the reason she is so happy in the morning is that she is high as a kite. Sadly though the drugs are not working on her pain and all we are doing is managing the symptoms and not the cause, which I am convinced is coming from her defunctioned large bowel. Our hope is that this admission will convince the doctors to proceed with putting in place plans to remove this dysfunctional colon, which biopsies have shown will never work, in the hope that it will help with her pain. However as always with Daisy the best laid plans go wrong, and no-one, least of all the nurses and doctors on Rainforest Ward were suprised when Daisy spiked a temperature last night and became unwell....this has resulted in the plans for this week of tests and two anaesthetics have had to be put on hold, IV antibiotics have been started and Daisy's pain medication has been ramped up again.
To add to everything, the trans-gastric jejenal tube which delivers meds and some milk feeds into the top part of her bowel was accidentally pulled out during her last hospice visit so we are limited to just TPN for nutrition and whatever water she is able to take orally during the day - we had also hoped to have a new transgastric jej placed under anaesthetic during this admission. It is a relief in some ways, at least she was in hospital, and most importantly in the specialist hospital, when she became unwell. I don't need to convince the medical staff how much pain she can experience at night, they know, but it is always good for them to see it so that plans for management and treatment can be formed. I am convinced this is the crisis that we have been waiting for, the pain meds have just been going up and up and while we just keep throwing more and more drugs at her we are not getting to the root cause. My instinct is that her colon has now flared up and is inflammed again, the discharge from her rear end indicates this and she constantly localises pain in the area of her colon, she is really tender to touch there at the moment.
I am almost hoping that now she is in the decision will be finalised about removing her colon, in my mind I am set for a long stay with some sort of surgical outcome. She could also have a surgically placed jejenostomy at the same time as the colectomy surgery which would save further anaesthetics if it came out again as I could replace this type of tube once I was trained. Obviously the downside to all of this is that we are talking about big surgery again with all the risks of anaesthetic, infection, bleeding, Daisy does not recover well from anaesthetic or surgery but it may give her the chance of being out of pain at night and also we would avoid yet another long summer holiday in hospital, something I want to avoid at all costs. The reality is, however, that none of us can go on with the amount of pain Daisy experiences at night, often she has a bruise on her forehead where she has banged it in frustration against the side of the cot in pain, she is worn out and we are worn out and it is no way for a family to live.
In the meantime we have to wait for blood culture results to see if the infection is in her blood stream and also a plan to reschedule her upper and lower endoscopies, manometry and jej tube replacement and then a conversation about the results and a probably colectomy.. nothing is ever done by halves in Daisy's world....
Of course the icing on the cake is that it is half term - yet another school holiday where the family is torn apart. Andy has taken the older three to France for a few days, at least they are all getting some sea air and I look forward to the wine and cheese they will bring back, my hope is that I will be able to take the older children at least to France for part of the Easter holidays, who knows, maybe Daisy will be well enough to join the whole family? Our biggest wish this year is to have the summer holidays together, and we will make this happen whatever is thrown in our path as a third year of summertime spent apart is just not an option, the children are growing up too quickly for this and we need to be together.
Which brings me to another battle we have been fighting on behalf of one of our other children. I have discussed blogging this with Theo and he is comfortable letting people know as he wants the world to know there is a reason for what can sometimes appear to be his odd behaviour. Theo has Aspergers Syndrome, this is something we had suspected for a long time but a combination of worries about Daisy, hope that it was just a phase or down to anxiety about our situation and a smattering of middle class denial has meant that Theo has only recently had a confirmed diagnosis. The signs were there since early childhood and I am grateful that many of the things that make Theo the amazing, intelligent, funny person he is are in some ways due to the fact he has Aspergers, he is not defined by the syndrome but it is part of who he is. Unfortunately puberty can really exacerbate some of the negative elements of Aspergers and this has resulted in problems in school and home, especially with anxiety and meltdowns. We are now working with our local authority to get Theo a statement of Special Education Needs in order to get him the support he needs in school (things like laptops, extra time in exams), we also are working with an Occupational Therapist, who just happened to be Daisy's first OT, to address some of Theo's sensory issues which can come with the diagnosis - he cannot cope with bright lights or too much noise and has to have time out breaks when he has sensory overload, this has caused him problems in school before where he has unconciously stood up and walked around the class in order to "get his head together" in the middle of a lesson, or rocked back and fore on his chair. He has been suffering from bad migraines for a while now and much of this is down to being overloaded. Andy and I have had a very steep learning curve as we try to understand Aspergers and how best to help Theo, again we have had to become experts very quickly in order to support and advocate for our son. In many ways it has given us a sense of relief, there is a reason for the meltdowns and our parenting style has had to adjust to parenting a son with Aspergers, breaking down instructions is one example, making sure that we stick to plans and he knows them is another.
Of course sticking to plans is not possible when you have a child like Daisy - once again she is in hospital and the plan has gone pear shaped, this makes Theo anxious and we have to manage his anxieties and stress. And on top of all of this we have two "typical" children in the middle who need time and love and care - all of this is a full time, full on job!
Again, Andy and I wonder how we cope, I guess we are eternal optimists, we have our unwritten rule whereby if one of us is down the other is not allowed to be, and we desparately try and make time for eachother. On Sunday evening we have a babysitter looking after the older three while Andy comes out to the hospital and we will pop out for a few cheeky glasses of red. We also have another project in the pipeline as we eagerly await the arrival Tulip, our vintage, orange VW camper van (called Tulip as she is originally from Amsterdam). We are hoping to have some fun family days out in Tulip and Andy is also looking forward to taking the boys to some campervan meets and festivals. In fact we are planning in our eternally optimistic way to take Daisy to her first music festival in July. We hope to meet up with old friends at Guilfest, Andy will camp with the boys in the van and as our hospice is not too far away Daisy, Xanthe and I will have a bit more luxury staying at Chase for the weekend!
I have set a mental deadline of Easter for this latest glitch to be sorted, I want the summer months to be about family time and fun - barbeques, day trips, cycling - once again, here's keeping everything crossed...
20 January 2011
Will David Cameron remember his promises to Carers?
I had a phone call at 11pm last night from a journalist asking if I would be prepared to comment on a radio breakfast show about the current story in the media involving the mother of a child with complex needs. This mother had met with David Cameron before the election where he had promised to support carers, she is now at her wits end trying to care for her disabled child (she is also a mother of four) with minimal respite and had posted on Mumsnet that she was considering putting her child into care. The journalist wanted to know what drives a mother to this point......
At the time of the call I was having a "bad Daisy night" (we class this as one where we have to give maximum doses of all her pain drugs over the night) - she was screaming in pain from her dysfunctional colon, writhing in agony and I was in no state to give any sort of sane comment to the press, however there is so much I want to say that I thought I would blog it...
Much as you can try, you will never know what it is like to parent a child like Daisy. Andy and I are fairly stoic, old fashioned in some ways, in that we try and get on with things. It has always been difficult for us to accept and ask for help. We keep smiling and gritting our teeth and muddle through, changing plans, juggling childcare, dealing with situations, to see us day to day you would not know what we have to do just to be up and out and dealing with the world....
Every single night is broken, sleep does not bring rest anymore, a good night is one where Daisy only wakes about twice, a bad night is one where we are watching the clock waiting until we can draw up the next syringe of ketamine or paracetomol so that we don't overdose her. Sometimes her stoma bag comes off or the night bag which attaches to the stoma bag at night detaches - can you imagine dragging yourself out of bed to clear up nearly half a litre of ileostomy fluid (liquid poo) from a child who has just managed to fall asleep, then change her bedding and settle her down? Sometimes she is itching , we don't know why, and itches to the point that she pulls her hickman line dressing off and we need to re-dress it - using sterile techniques, not easy when your eyes are half closed with sleep....
So we get through the night and Andy has to go to work and appear professional and together. I have to deal with our other three children who all need their mother, either to hunt down a missing oyster card at quarter to seven in the morning, find a missing piece of school uniform, deal with a homework ticket which they did not tell me about the night before and make sure they eat breakfast.. By this time Daisy, who was probably screaming and banging her head against the side of her cot in pain the night before is now all smiles and happy, I have to clean her TPN trolley and prepare everything for disconnection, draw up her meds for the day, disconnect her night bag and empty it and wash it out as I am not allowed to have a new night bag for every day for budget reasons...
I make up her milk to the recipe the dietitian has given, nothing is standard with Daisy so I can't get the pre-made bottles of milk other chidlren get. I curse myself each morning that I didn't make up the milk the night before....I run the milk through her enteral milk pump and give her the morning meds and while the TPN is winding down I throw myself in the shower while shouting to Jules to make sure he has his school bag ready.
I draw up the line locks we use to prevent hickman line infections and then I disconnect her TPN and lock the line. I dress Daisy in her school uniform, she can't do this for herself, put her leg splints on or if I am feeling lazy just her special boots with the retaining straps....she should wear the splints in order to delay the need for more leg surgery but they hurt her and sometimes there is just not enough time to get them on her. All the time I am looking out of the window praying the school bus won't be early so that I can do battle with her hair. It may seem a facile thing to worry about Daisy's hair with all the other things going on, one of the way Daisy's gene mutation and early failure to thrive have affected her is that she has very sparse, coarse, brittle hair, it knots easily and if it is not brushed and oiled daily forms into dreadlocks. So this is the part of the morning where I am not being a nurse, I am being a mum, brushing her hair, putting ribbons into it, anything to make it look tidy so that she is like any other 6 year old school girl, and also avoiding the need for me to cut great matted chunks out of it...
At 8am I emerge from Daisy's room and carry her downstairs. We have to lift and carry Daisy up and down the stairs all the time, always with one of her pumps connected. We have been doing battle with Social Services Occupational Therapy for the past 18 months to get a solution to how to get Daisy up and down stairs, at least we have moved on from the early days of our battle when they sent a man around to fix a bannister to the wall having never even met or assessed our child, needless to say he was sent packing. Today we were told we will hopefully get a stairlift to move her up and downstairs, however we will have to wait a while until new budgets are agreed later this year. I just hope that my back holds out between now and then and that I don't fall downstairs while carrying her......
I put Daisy into her special needs buggy, scribble an update in her home school diary (should have done that the night before too) and then help wheel her onto the school bus. I slurp down a cup of tea (often made but one of my children, they are well trained!) and then Jules and I leave for school.
Very rarely (infact I can only remember 2 occasions) I have gone back to bed for a sleep after the school run, there is always so much to do once the children have gone to school, starting normally with restoring Daisy's room back to a fit state to connect TPN later in the day. The new bag of TPN has to come out of the fridge and the bedding needs to be washed, some days there will be three loads of Daisy's bedding to wash - and I make the bed up in several layers so that I can peel layers off at night to save time!
Every Monday we get a delivery of TPN and ancilliaries, I need to order stoma supplies, enteral feeds and supplies get delivered, repeat prescriptions of meds, . I wish our PCT would just deliver full boxes of enteral syringes to us like friends who live in other areas. Instead we have to contact the homecare nurses when we need new syringes and they will leave a bag in the reception of outpatients if they are not passing our way in the next few days. I am then expected to reuse these syringes several times in order to save money, so more washing out and sterilising to add to my daily list....
The appointments are endless....eye hospital, audiology, orthopaedics, speech and language, local consultant, gastro consultant, cardiology, TPN consultant, ultrasounds, ecgs...... Thank goodness she is now in school and the physio can go and see her. The phone calls never end and the paper work is out of hand...forms for everything. Every year we have to reapply for school transport even though her needs will never change. The Disability Living Allowance form is probably the most soul destroying thing I have to do, and up until last year I was having to fill it in annually even though Daisy's condition will never ever get better....It takes days to fill in the form and it is a depression inducing exeercise to describe on page after page the worst and most negative aspects of your child's life when all you want to do is be positive. But you can never be positive when filling in a DLA form, one positive sentence in error, one hopeful comment and you could have your allowance stopped while they investigate. Like my poor friend whose daughter spends her night on oxygen and is regularly in and of hospital, on a really good day she may be able to manage the walk to school (but not back again), this was interpreted as "can walk to school" and her DLA was stopped, including her entitlement to a mobility vehicle while it was investigated, needless to say at appeal it was reinstated and back dated, but at what cost to the poor family who struggled in the interim.
Some days I just don't want to face all the admin and rubbish at home so I go out for a long walk or meet with friends and just for a few hours I become the person I should be. I'm not Daisy's mum or parent of disabled child trying to negotiate the system, I'm me, trying to have a life.... We have to have such broad shoulders becuase inevitably while our partners are at work we are the ones dealing with the officials and bureaucracy to make sure that our child gets the childhood they deserve. We are not trying to ask for more than we should, just a chance of a level playing field for our children and they need so much more than a typical child. And for me? I've stopped dreaming of going back to work, it's just no longer possible but how nice would it be to go somewhere where I wasn't Daisy's mum and having to use medical speak all the time... I would like an indoor wheelchair for Daisy so that she can participate in family life, so that her siblings don't have to lift her and so that she is not confined to her bed once her TPN is on, the problem is these chairs cost around £2,000 (nothing is cheap when it has the label special needs) and no-one can agree whose budget this should come out of, so while the grown ups are arguing we are left struggling or resorting to using the outside wheelchair inside the home..
I am very lucky in that Daisy has a fantastic key worker who has known us since she first came out of the neonatal unit. She has been our advocate and ally over the years and has fought to get Daisy a package of support, this has taken a long long time and now I'm informed that we have the biggest support package in the borough, and this is what it is - 2 funded nights a month at our hospice ( it went up to 2 nights in November and is only until the end of March when it will go to panel) and direct payments to enable us to buy in care. Bearing in mind we live in the most expensive city in the UK this money does not stretch as far as it would in other areas. However I am able to pay for an after school nanny (plus her tax & insurance) to come to the house from 3pm until 6pm, about twice a month a very good nurse friend comes to the house to babysit so that we can either take the other children out to do things we can't do with Daisy like go to the cinema, or go out ourselves. We are lucky, it is a very good package, but actually it's not respite, when the nanny comes to the house her job is to do the job I can't do because within 30 minutes of Daisy arriving home I have to put her TPN on, so she is talking to the children about their day or cooking their dinner while I am upstairs getting Daisy ready for the evening. She spends around 16hours a day connected to the TPN pump (when she is not on this she is on her enteral pump) so then she is limited to being in her buggy or cot. It is great to have another pair of hands to help even though she cannot do anything medical for Daisy but as Andy is in work and I have no family within 300 miles it is the next best thing.
Evenings are spent running up and downstairs to Daisy, adminstering meds and hoping she will sleep, which of course really doesn't happen...both Andy and I have fallen into a habit of staying up late, mainly because there is no way we can actually have an early night. We live for the nights when Daisy can go to the hospice, it is the only proper respite, I love my daughter desparately and will do anything for her but the only way I can get a break and recharge my batteries is when she is not in the house. We are so lucky to have Chase and to have such a long relationship with them, Daisy has been going there since she was only a few months old so it very much is like a second home. We had to fight and fight for social services to pay for funded, guaranteed nights at Chase Hospice. We had to prove there was no-where and no-one else who could manage her care and needs, Daisy has had her condition all of her life but it took until she was 6 years old for us to get 2 funded nights a month where we get time off from looking after Daisy. And this is where I can understand the mother who was considering putting her child into care, I doubt highly that she would have acutally done it but she probably woke up one day after night after sleepless night and thought, I've had enough of being trodden all over by faceless nameless people in committees and teams and panels who are playing God with me and my child's future. If social services were to look after Daisy full time it would cost them thousands and thousands more pounds than they currently pay to have me stay at home to look after her. However I am never party to any of the conversations or reviews or discussions, I never have the chance to present my child's case or represent her needs, I have to rely on others to do this.
My sense is that things are getting harder for us parents of disabled children, budgets are being stretched, care packages are being scrutinised, time delays are increasing all in the name of spending reviews and cost savings and all while our children are being denied the childhood they deserve. I had hoped that our Prime Minister would understand, he has walked in our shoes, he said so during his election campaign, he specifically singled out the cause of unpaid carers during one of his TV debates....I guess we can just live in hope that he will remember his promises.
11 January 2011
Sorry if you thought I had disappeared for a while - it really is so difficult to find the time to sit down and put my thoughts down, I find myself relying on quick facebook updates to stave off the inevitable texts which arrive when I have not been in touch for a while...so, where were we - December....
Daisy has continued to have problems with her repaired hickman line, sometimes itching so much she pulls the dressing off, this is not a good thing. A couple of times it has looked very red and infected but cultures have been coming back normal, and bloods are OK apart from Daisy's ongoing problem with chronic anaemia, despite nightly intravenous iron. The hickman line is Daisy's lifeline, without this access she cannot get TPN and would not be able to live so I am worried that things are not right with it - you get to know your child's line after a while and this one does not feel right....Daisy is having a Lineogram at GOS next week to see if there is a tiny tear under the skin which is causing the irritation. It's a difficult one, I hate have having to depend on a line which already has a repair but at the same time a new line would further limit her line access options as we cannot use previously used sites of which there are many, and as we all know Daisy is not good with anaesthetic and line insertions (an interventional radiologist told me once that her veins are very wiggly, imagine that, all those years of medical training for a diagnosis of wiggly veins).
Line worries aside the main thing we continue to be concerned about is Daisy's pain, we had to up her pain medication over Christmas and use buccal ketamine about 5 nights out of seven. We all live with Daisy's pain on a daily basis - in fact during the day she only occassionally experiences pain, night time is another matter and she becomes a different child to the one everyone knows. Our other children rarely have friends over for sleepovers and we only ever invite "understanding" friends and family over to stay because often the household is woken up by her screaming. We continue to wait on a date from GOS for a manomentry and other tests to see if the high output from Daisy's small bowel can be managed, I have my doubts....when we do eventually go back in , Andy and I will ask for a second opionion referral to Birmingham Children's Hospital where they have made a lot of progress with children with intestinal failure. We have been told that transplant is not an option, for various reasons, from the risks posed by her Costello Syndrome to the concerns that the pain may remain despite a new gut, but for Daisy's sake we have to leave no stone unturned. In the remote possibility that Birmingham thinks that transplant may help, Andy and I are not sure that we would even put Daisy through that, but we need to at least have explored all options even if it does confirm once and for all that the only option is life on TPN.
Another option we do want to explore is the possibility of removing Daisy's colon entirely. The biopsies have shown that it will never work properly and is the likely culprit of the pain she experiences, even though it is defunctioned it still gives her grief with daily mucous and bloody discharge from her bottom - again the worry is, what if this does not help, it's a big surgery to put her through but hopefully one with less long term risks. Of course all of these conversations depend on us getting back into GOS for our inpatient stay or at least moving Daisy's outpatient appointment forward. However over the years I have learned not to burn any bridges and to be patient, Daisy's gastro consultant is the best in his field and he has always done the right thing for Daisy so I will try and be patient while we wait for the call....
Of course since my last post we have celebrated Daisy's 6th Birthday, Christmas and New Year - all of which have been significant dates in life with Daisy to date - this year was probably the best yet - no hospital, she was well and there was even snow! Daisy loved the snow, especially sledging on the common opposite our house with her big brothers and sister, however it did put paid to our plans to have a proper birthday party for her as everyone was snowed in. In the end we had an impromtu party with local friends and Daisy's wonderful carer managed to get to the house (probably because she is swedish and not phased by a bit of snow) and did a magic show for the children.
Daisy loved Christmas, especially all her Singing Hands dvds and her ELC Happyland Village. Daisy knows Singing Hands from many months spent in GOS and now appears in one of their DVDs, we bumped into them while visiting Chase just before Christmas and Daisy was beside herself with excitement. Singing Hands are probably the main way Andy and I have learned Makaton, Daisy's signing system so we were pleased they have produced a Christmas DVD so we can sign along to I'm dreaming of a White Christmas,....
The start of this year feels more optimistic than previous years - in a way it shouldn't, Daisy's gastro problems are the worst they have ever been, her TPN requirements keep going up and her stoma output remains at an average of a litre, her pain meds are being increased regularly, but cognitively she is coming on in leaps and bounds, she vocalises more and more, shouting for her brothers to come and put DVDs on, or demanding help with games, she is growing up in so many ways and shows us daily how capable she is. In many ways we now know what is happening with her gut, TPN is forever and the stoma is permanent, we can live with that now. Tomorrow the palliative consultant is coming to visit to adjust the pain meds and add a new one in, hopefully we will get some answers from the gastro consultant soon about colectomy surgery and second opinion referrals, so more than ever before there is a plan and we know what is happening.
My daily battles still continue trying to get support, equipment and respite help - it is these things that wear you down, I know what Daisy and the family needs but sometimes we have to jump through so many hoops to get to that point, and I also think that living where we do doesn't help, there is a postcode lottery element to support for children with disabilities. And beyond these battles we have more mundane issues like the leaking sewer pipes underneath our kitchen floor....at the moment we have no kitchen, all of Christmas was spent with us burning scented candles to hide the smell, hopefully the work will be finished by the end of January and we will have a shiny new kitchen and floor and no more broken sewer pipes...hopefully my sanity will be intact as I fill kettles in the bathroom and washup in the bath....Daisy is oblivious to the chaos of our lives, school is the most important thing in her life, followed by Singing Hands and then her siblings who are at her constant beck and call....she is surounded by love and happiness and that is why, whatever it brings, 2011 will be good for us...
Daisy has continued to have problems with her repaired hickman line, sometimes itching so much she pulls the dressing off, this is not a good thing. A couple of times it has looked very red and infected but cultures have been coming back normal, and bloods are OK apart from Daisy's ongoing problem with chronic anaemia, despite nightly intravenous iron. The hickman line is Daisy's lifeline, without this access she cannot get TPN and would not be able to live so I am worried that things are not right with it - you get to know your child's line after a while and this one does not feel right....Daisy is having a Lineogram at GOS next week to see if there is a tiny tear under the skin which is causing the irritation. It's a difficult one, I hate have having to depend on a line which already has a repair but at the same time a new line would further limit her line access options as we cannot use previously used sites of which there are many, and as we all know Daisy is not good with anaesthetic and line insertions (an interventional radiologist told me once that her veins are very wiggly, imagine that, all those years of medical training for a diagnosis of wiggly veins).
Line worries aside the main thing we continue to be concerned about is Daisy's pain, we had to up her pain medication over Christmas and use buccal ketamine about 5 nights out of seven. We all live with Daisy's pain on a daily basis - in fact during the day she only occassionally experiences pain, night time is another matter and she becomes a different child to the one everyone knows. Our other children rarely have friends over for sleepovers and we only ever invite "understanding" friends and family over to stay because often the household is woken up by her screaming. We continue to wait on a date from GOS for a manomentry and other tests to see if the high output from Daisy's small bowel can be managed, I have my doubts....when we do eventually go back in , Andy and I will ask for a second opionion referral to Birmingham Children's Hospital where they have made a lot of progress with children with intestinal failure. We have been told that transplant is not an option, for various reasons, from the risks posed by her Costello Syndrome to the concerns that the pain may remain despite a new gut, but for Daisy's sake we have to leave no stone unturned. In the remote possibility that Birmingham thinks that transplant may help, Andy and I are not sure that we would even put Daisy through that, but we need to at least have explored all options even if it does confirm once and for all that the only option is life on TPN.
Another option we do want to explore is the possibility of removing Daisy's colon entirely. The biopsies have shown that it will never work properly and is the likely culprit of the pain she experiences, even though it is defunctioned it still gives her grief with daily mucous and bloody discharge from her bottom - again the worry is, what if this does not help, it's a big surgery to put her through but hopefully one with less long term risks. Of course all of these conversations depend on us getting back into GOS for our inpatient stay or at least moving Daisy's outpatient appointment forward. However over the years I have learned not to burn any bridges and to be patient, Daisy's gastro consultant is the best in his field and he has always done the right thing for Daisy so I will try and be patient while we wait for the call....
Of course since my last post we have celebrated Daisy's 6th Birthday, Christmas and New Year - all of which have been significant dates in life with Daisy to date - this year was probably the best yet - no hospital, she was well and there was even snow! Daisy loved the snow, especially sledging on the common opposite our house with her big brothers and sister, however it did put paid to our plans to have a proper birthday party for her as everyone was snowed in. In the end we had an impromtu party with local friends and Daisy's wonderful carer managed to get to the house (probably because she is swedish and not phased by a bit of snow) and did a magic show for the children.
Daisy loved Christmas, especially all her Singing Hands dvds and her ELC Happyland Village. Daisy knows Singing Hands from many months spent in GOS and now appears in one of their DVDs, we bumped into them while visiting Chase just before Christmas and Daisy was beside herself with excitement. Singing Hands are probably the main way Andy and I have learned Makaton, Daisy's signing system so we were pleased they have produced a Christmas DVD so we can sign along to I'm dreaming of a White Christmas,....
The start of this year feels more optimistic than previous years - in a way it shouldn't, Daisy's gastro problems are the worst they have ever been, her TPN requirements keep going up and her stoma output remains at an average of a litre, her pain meds are being increased regularly, but cognitively she is coming on in leaps and bounds, she vocalises more and more, shouting for her brothers to come and put DVDs on, or demanding help with games, she is growing up in so many ways and shows us daily how capable she is. In many ways we now know what is happening with her gut, TPN is forever and the stoma is permanent, we can live with that now. Tomorrow the palliative consultant is coming to visit to adjust the pain meds and add a new one in, hopefully we will get some answers from the gastro consultant soon about colectomy surgery and second opinion referrals, so more than ever before there is a plan and we know what is happening.
My daily battles still continue trying to get support, equipment and respite help - it is these things that wear you down, I know what Daisy and the family needs but sometimes we have to jump through so many hoops to get to that point, and I also think that living where we do doesn't help, there is a postcode lottery element to support for children with disabilities. And beyond these battles we have more mundane issues like the leaking sewer pipes underneath our kitchen floor....at the moment we have no kitchen, all of Christmas was spent with us burning scented candles to hide the smell, hopefully the work will be finished by the end of January and we will have a shiny new kitchen and floor and no more broken sewer pipes...hopefully my sanity will be intact as I fill kettles in the bathroom and washup in the bath....Daisy is oblivious to the chaos of our lives, school is the most important thing in her life, followed by Singing Hands and then her siblings who are at her constant beck and call....she is surounded by love and happiness and that is why, whatever it brings, 2011 will be good for us...
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