I failed to mention the overwhelming sense of fear suffered by Ellie in the lead up to the appointment, the last couple of days have seen her behaving totally out of character, tears and tantrums. She's never been before, and even so far through all this illness, been that sort of child. The anxiety levels we were all experiencing were through the roof.
It's no wonder she's become hospital phobic, our first trip to A&E lasted 13 hours, most of those spent waiting around and repeating her story to various doctors and nurses, and a good couple spent puncturing veins in a desperate attempt to retrieve blood samples that were not forthcoming from her sunken, dehydrated veins. She was discharged to return for more tests the following week. When she was admitted she ended up being sedated and pinned down by myself and 2 nurses as she fought to stop the nasogastric tube being inserted into her stomach as she retched and screamed and begged us to stop. And the nausea, pain and humiliation of the experience did not end there. She left a week later in only a little less pain and a lot more traumatised.
So it's no surprise that she begged and pleaded not to go today, she said she knew what would happen, we'd have a long boring wait and then she be prodded and poked and asked the same questions. And she was right, that was exactly what happened. But I saw the relief on her face on the train home that another trip to see medical professionals was over, and without it escalating out of her control and into a more unpleasant experience than she is already suffering having to live her life as it is right now.
Tuesday, 24 January 2012
How to have a positive, negative experience.
As a lot of you are aware, today I took my 11 year old daughter Ellie for an appointment at Great Ormond Street Hospital. She'd been referred there by our local health authority here in Brighton because since May last year she has suffered from chronic stomach pain. Extensive tests she had here in Brighton when she started suffering revealed no obvious pathology, her consultant rather tactlessly implied that it was a "psychologically driven" pain, i.e. she was either choosing not to let go of the feelings of pain that had come about after the initial virus that she and I suffered that triggered the illness, or that she was in fact just exaggerating or lying about being in pain at all. He offered us few options for care, we took his advice though and after a couple of months we saw no improvement.
We got a second opinion, we saw a Paediatric Gastroenterologist, a Professor no less, who had far more experience in treating children with the same pattern of illness. He suggested her problem lay within the nerves of her stomach lining and her problems were further being aggravated by poor posture causing pain in her lower thoracic spine by her hunching to protect her area of pain, he referred her to a specialist physiotherapist who was wonderful but a) we had to pay for ourselves as she worked outside of our health trust, and b) we only got to see once because she was so far away, although Ellie's care has continued privately , under her guidance, by a former colleague of hers here in Brighton who is also going above and beyond to try see that Ellie gets the care she needs.
Anyway, most of you know all this, and to cut a verrrrrrry much longer story a heck of a lot shorter, today we went to Great Ormond Street. So how did it go is what everyone's wondering? Well, i'm not sure to be honest, it's taking me a while to work out. She had her weight and height taken when we arrived and then we waited two hours to be seen, when we were it was by a consultant, a nurse, a child psychologist and some other guy who i've know idea who he was or why he was there. They were sympathetic, understanding, they didn't imply that Ellie was making it up or relishing her situation in any way, but they didn't provide us with any more support mechanisms to help us cope with the deteriorating child that sat before us.
The biggest problem that Ellie has right now is that the constant pain in her stomach has gradually stopped her eating, since the illness began, the foods she deemed "safe" (i.e. they don't hurt to eat or don't worsen the pain too much) have got less and less. She doesn't have any issues with her weight, she is not concerned by her calorie intake, she just associates food with pain so at the moment she is surviving on 2 or 3 Fortisip (300 calorie supplementary drinks) each day, and I can only persuade her to (reluctantly) force those down so that she can have the potentially stomach lining destroying painkillers that are the only thing that brings her any relief. Little was talked about in regard to this problem other than that she should be having her height and weight taken by medical professionals at least once a month and not even that is happening at the moment. So I am worried, worried that only we, as her close family, can see her deterioration, and it won't been seen or taken seriously until the situation has become critical, and by then it might be too late. I've tried to get her to eat, it's terribly upsetting and frustrating, i've offered her as little or as much of anything edible she may desire, but the pleasure of food has been completely destroyed for her by the demon pain pay-off that follows after eating.
No helpful suggestions (or even unhelpful ones for that matter) were offered about her inability to sleep because of the pain either. It was made clear that she has been referred to, and is now a patient of the pain clinic, and they do not test for pathologies or help with sleeping problems or food disorders.
So on the positive side, we now have the support of a first-class pain management centre that will try and help us to help Ellie at least learn how to best manage and cope with her pain, if not get rid of it altogether. Also, they intend to give the people here in Brighton who should be monitoring her sleep and weight problems a kick up the backside to make sure she is kept a closer eye on.
On the negative side the prognosis is still a complete mystery to us. Will the pain go on another month, a year, a lifetime? They told us the things we should be doing to try and improve her chances of conquering the pain and turning her situation around, but I already knew all these things they were telling me, I had already gone down that road, enforcing routines and regimes, only to see a marked deterioration in her pain levels. I tried all that but I can't break this vicious circle now it's in full swing. It hurts so she doesn't eat, she doesn't eat so she gets weak, she's weak so she can hardly walk, she can't go out so she gets depressed, she gets depressed so she gets upset, she gets upset so her pain worsens... I'm trying, i'm really trying to stop her spiralling but i'm obviously not doing very well at it but things are only going downhill.
So on reflection, after today, I think this is how I feel: I'm glad she's been referred to the pain clinic, but i'm disappointed that they will not be able to help us with what have become more urgent issues that have to be tackled imminently for the sake of Ellie's health. And I feel sad, because I think deep down I hoped there would be an easy answer, but then i think deep down I already knew there wasn't one.
We got a second opinion, we saw a Paediatric Gastroenterologist, a Professor no less, who had far more experience in treating children with the same pattern of illness. He suggested her problem lay within the nerves of her stomach lining and her problems were further being aggravated by poor posture causing pain in her lower thoracic spine by her hunching to protect her area of pain, he referred her to a specialist physiotherapist who was wonderful but a) we had to pay for ourselves as she worked outside of our health trust, and b) we only got to see once because she was so far away, although Ellie's care has continued privately , under her guidance, by a former colleague of hers here in Brighton who is also going above and beyond to try see that Ellie gets the care she needs.
Anyway, most of you know all this, and to cut a verrrrrrry much longer story a heck of a lot shorter, today we went to Great Ormond Street. So how did it go is what everyone's wondering? Well, i'm not sure to be honest, it's taking me a while to work out. She had her weight and height taken when we arrived and then we waited two hours to be seen, when we were it was by a consultant, a nurse, a child psychologist and some other guy who i've know idea who he was or why he was there. They were sympathetic, understanding, they didn't imply that Ellie was making it up or relishing her situation in any way, but they didn't provide us with any more support mechanisms to help us cope with the deteriorating child that sat before us.
The biggest problem that Ellie has right now is that the constant pain in her stomach has gradually stopped her eating, since the illness began, the foods she deemed "safe" (i.e. they don't hurt to eat or don't worsen the pain too much) have got less and less. She doesn't have any issues with her weight, she is not concerned by her calorie intake, she just associates food with pain so at the moment she is surviving on 2 or 3 Fortisip (300 calorie supplementary drinks) each day, and I can only persuade her to (reluctantly) force those down so that she can have the potentially stomach lining destroying painkillers that are the only thing that brings her any relief. Little was talked about in regard to this problem other than that she should be having her height and weight taken by medical professionals at least once a month and not even that is happening at the moment. So I am worried, worried that only we, as her close family, can see her deterioration, and it won't been seen or taken seriously until the situation has become critical, and by then it might be too late. I've tried to get her to eat, it's terribly upsetting and frustrating, i've offered her as little or as much of anything edible she may desire, but the pleasure of food has been completely destroyed for her by the demon pain pay-off that follows after eating.
No helpful suggestions (or even unhelpful ones for that matter) were offered about her inability to sleep because of the pain either. It was made clear that she has been referred to, and is now a patient of the pain clinic, and they do not test for pathologies or help with sleeping problems or food disorders.
So on the positive side, we now have the support of a first-class pain management centre that will try and help us to help Ellie at least learn how to best manage and cope with her pain, if not get rid of it altogether. Also, they intend to give the people here in Brighton who should be monitoring her sleep and weight problems a kick up the backside to make sure she is kept a closer eye on.
On the negative side the prognosis is still a complete mystery to us. Will the pain go on another month, a year, a lifetime? They told us the things we should be doing to try and improve her chances of conquering the pain and turning her situation around, but I already knew all these things they were telling me, I had already gone down that road, enforcing routines and regimes, only to see a marked deterioration in her pain levels. I tried all that but I can't break this vicious circle now it's in full swing. It hurts so she doesn't eat, she doesn't eat so she gets weak, she's weak so she can hardly walk, she can't go out so she gets depressed, she gets depressed so she gets upset, she gets upset so her pain worsens... I'm trying, i'm really trying to stop her spiralling but i'm obviously not doing very well at it but things are only going downhill.
So on reflection, after today, I think this is how I feel: I'm glad she's been referred to the pain clinic, but i'm disappointed that they will not be able to help us with what have become more urgent issues that have to be tackled imminently for the sake of Ellie's health. And I feel sad, because I think deep down I hoped there would be an easy answer, but then i think deep down I already knew there wasn't one.
Wednesday, 4 January 2012
Little Broken Things
Some of my Twitter pals may be wondering why I've not been around very much recently, the truth is I've been struggling a bit and my usual jovial puntastic nonsense has been severely lacking.
A few days before Christmas I took my car to the garage, the back brakes had started to squeal and I knew this wasn't a healthy sign that all was well with them. I gave them my mobile number and wondered into town. After a while the garage rang to say my car needed over 400 squids worth of work doing to it. I cried and cried all the way back to the garage where I collected my car in the hope of finding a better deal elsewhere. I could just about afford to get the work done using the last of my savings, I'd had a lot more of which this time last year.
Anyway, it wasn't the thought of eating away at my last lump of available bank balance that upset me, that was there for such eventualities as this, it was that so much of that money had gone to supporting the family while I am unable to work because Ellie continues to be so ill. Also, a lot of that money was spent on private treatment for her in the desperate hope that something might helps us make progress, and they were the only things that seemed (if only very slightly) to help improve her quality of life at all.
That morning, when she woke, I had hugged her, as I do many times a day, every day. But she wasn't wearing her usual layers of clothing, just a nightdress, and through that one flimsy piece of material I could feel all her rib bones protruding down her back, and I felt over-whelmed with a rush of fear, a panic that no matter how the doctors had reassured us that although whatever was causing her pain couldn't possibly be life-threatening, her intense fear of food she had developed could be.
The point is that the reason why I was really crying was not because the cost of the car repairs were far higher than anticipated, or that there would be no savings left for the next big bill that would inevitably come at some point and bite me on the behind, it was just the sudden acceptance of the horrifying reality that might unfold if things didn't turn themselves around.
One morning in August, shortly before Ellie was due to start at secondary school, I had an intensely vivid dream. Ellie was dressed in the new uniform we had bought her for her move up to secondary school and she was leaping up on the back of the sofa in the manner she always used to that drove me crazy, she was a bouncing ball of energy. I woke up and rushed to the bathroom, locked the door, and sobbed. She'd been ill for so long i'd forgotten about the girl she used to be, and I realised I missed her so much, and felt for sad for her, how her life had become. That day was a really memorable low point for me, as was the garage day.
So truth be told I ain't feeling so upbeat, but I'm holding out for the Great Ormond Street Hospital appointment at the end of the month. Fingers crossed that helps us turn that corner.
Oh, and thank you and so much love to all who've been supportive to me, it means more than words can express.
xxxxxxxxx
A few days before Christmas I took my car to the garage, the back brakes had started to squeal and I knew this wasn't a healthy sign that all was well with them. I gave them my mobile number and wondered into town. After a while the garage rang to say my car needed over 400 squids worth of work doing to it. I cried and cried all the way back to the garage where I collected my car in the hope of finding a better deal elsewhere. I could just about afford to get the work done using the last of my savings, I'd had a lot more of which this time last year.
Anyway, it wasn't the thought of eating away at my last lump of available bank balance that upset me, that was there for such eventualities as this, it was that so much of that money had gone to supporting the family while I am unable to work because Ellie continues to be so ill. Also, a lot of that money was spent on private treatment for her in the desperate hope that something might helps us make progress, and they were the only things that seemed (if only very slightly) to help improve her quality of life at all.
That morning, when she woke, I had hugged her, as I do many times a day, every day. But she wasn't wearing her usual layers of clothing, just a nightdress, and through that one flimsy piece of material I could feel all her rib bones protruding down her back, and I felt over-whelmed with a rush of fear, a panic that no matter how the doctors had reassured us that although whatever was causing her pain couldn't possibly be life-threatening, her intense fear of food she had developed could be.
The point is that the reason why I was really crying was not because the cost of the car repairs were far higher than anticipated, or that there would be no savings left for the next big bill that would inevitably come at some point and bite me on the behind, it was just the sudden acceptance of the horrifying reality that might unfold if things didn't turn themselves around.
One morning in August, shortly before Ellie was due to start at secondary school, I had an intensely vivid dream. Ellie was dressed in the new uniform we had bought her for her move up to secondary school and she was leaping up on the back of the sofa in the manner she always used to that drove me crazy, she was a bouncing ball of energy. I woke up and rushed to the bathroom, locked the door, and sobbed. She'd been ill for so long i'd forgotten about the girl she used to be, and I realised I missed her so much, and felt for sad for her, how her life had become. That day was a really memorable low point for me, as was the garage day.
So truth be told I ain't feeling so upbeat, but I'm holding out for the Great Ormond Street Hospital appointment at the end of the month. Fingers crossed that helps us turn that corner.
Oh, and thank you and so much love to all who've been supportive to me, it means more than words can express.
xxxxxxxxx
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