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?
4 July 2011
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
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...
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