Time is so precious. Time to me is more important than money. I'd rather work less, have less, buy me some more time. So why do I waste so much of it? My Twitter addiction is a massive culprit at the moment. Food is consumed straight from the packet/foil take-away container to save having to load the dishwasher, the cat has gone feral, the bedding is crunchy and no-one in the house has worn clean underwear in weeks. But I just thought of a knob gag that might make a few people giggle (or more often than not *groan*) so to hell with the mind numbing banality of housework.
When I started Tweeting I thought I could handle it. People warned me, "It begins with the occasional little Tweet, just for fun, just at weekends. Then you move on to longer Tweets, get sucked into conversations, you can't make it through the day without Tweeting, you sneak into the toilets for a Tweet at work cos your fingers are all Twitchy. Before you know it you're Tweeting 80...90 times a day, you can't sleep, all you can think about is where the inspiration for your next pun will come from..." It's a slippery slope and i'm whizzing down it on a greased up tea-tray.
It's not just Twitter though, I've always been like this, always craving some kind of constant mental stimulation. Before Twitter there was Facebook Scrabble (oh how I love the Scrabble), and before that copious amounts of crosswords (and the occasional Sudoku, although I'd choose words over numbers any day).
I'm not a fan of movement in general, to say I'm sedate is probably an understatement, I'm positively sedentary, come to think of it, I'm silt. I am green with envy of people who enjoy exercise, to me it's just boring and painful and occasionally vomit-inducing. Something else that despite my wishing I didn't feel this way about, will always be consigned to my "To Don't" list. However, I am still able to empathise with the kind of person that is constantly a bit hyped-up, you know, the energetic, lively sort who bounces out of bed in the morning and embraces the day. Who goes for a swim before work and a jog after. Who spends a whole day cycling at the weekend...and goes to the gym every evening...and does a yoga class...and teaches thai fucking kick-boxing in their fucking lunchbreak!! Yes, I can empathise with them, because my brain works in the equivalent way to their bodies. It never let's me get any bloody peace. And whether I'm sorting the bills, washing the car, walking the cat, ironing the driveway or watching naked Bruce Willis juggle flaming chainsaws whilst rescuing a kitten from a sky-diving accident... I'll still be kind of bored and want to be doing something else more mentally stimulating at the same time.
I'm just rambling now which is a sign I should probably stop writing this now and go do some of that housework. I think the kids might at risk of getting mange....
Wednesday, 28 September 2011
Wednesday, 20 July 2011
So Insomnia ,so far...
I can't bleedin' sleep again.
I'm not alone here no doubt. I'm guessing that a sizeable chunk of the population of this country is in the same unfortunate state of consciousness for this time of night as I am, and it sucks.
My mum has always been able to sleep like a Martini, any time, any place, any where. My dad however, who I am genetically cursed to be most similar too, couldn't get to sleep in a dark room, on a dark night, with a background noise of nursery rhymes and a nightcap of Rohypnol.
Whilst the energy levels of my body can be likened to a light bulb being lit by a small waterwheel, I think my brain has ADHD. It never fucking shuts up, especially at night. So I have developed different ways, at different times, of drowning out the background burble of shite that it so dang maddening.
Recently, I have been using Twitter as a distraction to my night time lack of hypnagogia. Tonight it'd be best described as pissing me around so I'm falling back on a bit of blog action to help me try get my eyelids drooping.
Insomnia like is a tapping on the window of the brain (with a finger that is, not News of the World style). An irritating cackle of mischievous wee irksome sprites on the periphery of the mind, whose only desire is to whisper sweet bollocks in ones ears to the point that you'd rather rip out your own auditory cortex than listen to another minute of their tortuous nonsense. It's not a disease, you can't catch it and you can't be rid of it with a simple course of antibiotics. It's more like a gypsy curse, like something I became doomed to endure after wistfully dismissing a gnarled old crone's offer of lucky heather many, many moons ago, when I was young, and foolish, and impetuous...
Any way that you look at it, it seems like it's here to stay, those irksome sprites are like a house guest that you politely told once, in a drunken moment of affection, that they could shtay ash longash they wannid....hic! Who, whilst realising that you were off your Thresher's trolley at this time, decided to ignore that fact and move themselves, their furniture, and their immediate family into your spare room for the foreseeable future. And now you have to live with the consequences, to accept the fact that they are here to stay, and make the most of their unwanted company.
So while they are up, having some late night, studentesque, putting-the-world-to-rights session with their feet up on my parietal lobe, I am writing this, in the hope that it's so boring it'll make us all feel sleepy...
...I think it has a bit...*yawns*
I'm not alone here no doubt. I'm guessing that a sizeable chunk of the population of this country is in the same unfortunate state of consciousness for this time of night as I am, and it sucks.
My mum has always been able to sleep like a Martini, any time, any place, any where. My dad however, who I am genetically cursed to be most similar too, couldn't get to sleep in a dark room, on a dark night, with a background noise of nursery rhymes and a nightcap of Rohypnol.
Whilst the energy levels of my body can be likened to a light bulb being lit by a small waterwheel, I think my brain has ADHD. It never fucking shuts up, especially at night. So I have developed different ways, at different times, of drowning out the background burble of shite that it so dang maddening.
Recently, I have been using Twitter as a distraction to my night time lack of hypnagogia. Tonight it'd be best described as pissing me around so I'm falling back on a bit of blog action to help me try get my eyelids drooping.
Insomnia like is a tapping on the window of the brain (with a finger that is, not News of the World style). An irritating cackle of mischievous wee irksome sprites on the periphery of the mind, whose only desire is to whisper sweet bollocks in ones ears to the point that you'd rather rip out your own auditory cortex than listen to another minute of their tortuous nonsense. It's not a disease, you can't catch it and you can't be rid of it with a simple course of antibiotics. It's more like a gypsy curse, like something I became doomed to endure after wistfully dismissing a gnarled old crone's offer of lucky heather many, many moons ago, when I was young, and foolish, and impetuous...
Any way that you look at it, it seems like it's here to stay, those irksome sprites are like a house guest that you politely told once, in a drunken moment of affection, that they could shtay ash longash they wannid....hic! Who, whilst realising that you were off your Thresher's trolley at this time, decided to ignore that fact and move themselves, their furniture, and their immediate family into your spare room for the foreseeable future. And now you have to live with the consequences, to accept the fact that they are here to stay, and make the most of their unwanted company.
So while they are up, having some late night, studentesque, putting-the-world-to-rights session with their feet up on my parietal lobe, I am writing this, in the hope that it's so boring it'll make us all feel sleepy...
...I think it has a bit...*yawns*
Wednesday, 13 July 2011
My kid is ill.
My kid is ill.
So this is why i'm here. A need to express my frustrations, an outlet for my fear and stress and bewilderment. I guess it might help, it's worth a try. Also, just to share my experiences of dealing with doctors and hospitals, and coping (or not) with a kid that is unwell day in, day out, for weeks on end.
I have 2 daughters, Jo, who is now 15, and Ellie, who is 11.
Jo is a very healthy girl, always has been. I remember once, when she was about 5, she caught a really nasty virus, and I knew it was bad, mother's instict told me. I called the doctors eventually, when I was really worried. I was at home with her alone with no transport and they said they didn't do home visits for children, I could understand why. Her dad came home and we took her in to the surgery. The doctor said she'd seen 17 other sick kids that day and that mine was the only one that had obviously needed antibiotics. My insticts were right.
That was the only time Jo was ever really ill.
Ellie was a healthy baby. A very laid back kid. We had been worried that she might inherit her dad's many allergies, but she seemed fine, not a problem in sight, until she was nearly 3. Then just as we were starting to potty train her she developed a very severe nappy rash. She became terrified of pooing, it made her ill.
2 years of pain ensued. 1 week in every 3 spent in screaming agony. She had several stays in hospital, but she got better, eventually, although it was a long and tough process. By 5 she was well again.
At about 7, she started to develop eczema.
Little bits to start with, the odd sore patch here and there. But soon the little sore patches became big sore patches, and the minor discomfort became major irritation. And then terrible painful skin lesions and severe flair ups began. For the next few years our lives were dominated by trips to the outpatients department at the children's hospital, routines and regimes of creams and baths and bandages....
When your kid is ill everyone has an opinion. The feedback from people is both welcome and unwelcome in equal measures. Either way it is very much forthcoming. You are grateful for and cling to little nuggets of information that might be useful, something, anything, that might just be that thing that makes the difference. You eagerly, hopefully, try the suggestions that might just be the answer?! In this case, unfortunately, they never were. Nothing much helped, except some pretty strong steroid creams prescribed by the doctors that is.
She grew out of it. Gradually, between the ages of 9 and a half and 10 and a half. Life had never been so good for her!
Ellie is a happy kid. In spite of it all she always has been. She is popular at school, lots of friends, never been demanding, always done well in anything she set her mind to, and I doubt she'd have been particularly bothered if she hadn't. Life plodded on, she was content.
On the 18th May this year I walked into her room and she said
"I've got a tummy ache."
I was ill myself. I had developed stomach pains and nausea the previous evening, so the natural assumption was that we both had the same illness. I work in a hospital, I am surrounded by sick people, and even supposedly healthy people who are infectious germ carriers. I come into contact with so many people each day, it's inevitable that i'll pick up bugs on a regular basis.
Over the course of the next few days I suffered the most, I felt flu like (but not quite bad enough for it to be flu, after all, i'm not a bloke) for a couple of days, and then recovered gradually over the couple of days following, and then I was back to my normal health. Ellie however, did not progress from the virus in the same way as I did.
In the first week she felt very nauseous, with intermittent bouts of stomach pain. By the end of that week her stomach pain was the most dominant symptom, with the nausea subsiding.
She still couldn't go to school. The pain persisted, coming and going but getting ever more frequent. By the end of the second week the pain was pretty much permanent. We went to see the doctor, he said that sometimes a nasty bug can be hard for a kids stomach to recover from and put her on antacids, but they didn't seem to help at all.
I started getting really worried. You assume that, even if a bug is persistent, even if it is a particularly bad one, that after a couple of weeks there should be some sign of improvement, but there wasn't. My mind worked overtime, I feared all those things that you dare not think might be happening to your child, we were in a dark place.
She was getting worse.
Her dad took her back to see another doctor. He took some time off work, I had taken enough. She hadn't been at school for nearly 3 weeks, I had to show my face at the work for a few days for fear of losing my job. Being parted from my increasingly pained, distressed and clingy child was just awful, it felt completely unnatural. The doctor sent her to the local children's hospital for blood tests. She had them done, they all came back normal.
She was just getting worse. The fear of what might be going on inside her was all consuming, watching her in pain was getting unbearable. At a loss to know what to do i took her to A&E. The doctor there said they wouldn't see her in the children's hospital unless they thought her life was at immediate risk, and despite her obvious pain he didn't believe it was. He sensed our desperation and found a way to get her seen in the kid's medical assessment unit by insisting she needed to be seen by the surgical team, just to be sure that her problem wasn't something that would need surgical intervention. We spent the next 12 hours in the children's hospital, having test after test, seeing doctor after doctor, they were thorough. Eventually, after all blood tests came back clear, and the only anomaly they found was microscopic haematuria (a very small amount of blood in the urine), they thought she might have contracted the H.Pylori virus, and sent us home with Gaviscon and Ranitidine and more tests pending.
The medications didn't help. We'd been in hospital on the Friday and by Monday there was no sign of improvement, in fact, things were getting even worse. We went back on Tuesday, they found blood in her urine again and became and at that point considered that she might have a kidney problem. They sent her for an x-ray, it showed something that may or may not have been calcifications in her ureter, so the paediatric radiologist that evaluated the image decided to do an ultrasound there and then. It showed nothing unusual. Having worked in an imaging department for a few years, having taken x-rays myself and seen ultrasounds, and having friends who are sonographers, I was aware of the limitations of medical imaging. I knew that while they would be mostly able to get a reasonable idea of what was going on in her kidney's, they wouldn't be able to see her ureters. So it came as no surprise when they said that they would like to do an IVU to get a better idea of how her urinary system was functioning, but that wouldn't be possible for at least a week. We went home again.
By this point she was hardly eating at all, just a yoghurt here, half a packet of crisps there, but most days she refused to eat anything at all because it made the pain worse. And she couldn't hardly move about, just sat around, she became so weak and dizzy I had to help her just to get to the bathroom and back. When she walked she walked slowly, doubled up in pain, clutching the upper left side of her tummy.
It all gets blurry. I was getting so tired at this point. The pain had evolved from being bad up until she fell asleep at night to keeping her from getting to sleep at night until very late. And she was waking up early. And making griping and grunting noises all through the night as she slept. And writhing and kicking out in her sleep.
We'd first been in hospital on the Friday, increasingly concerned at her lack of progress, I took her back to the hospital on the Tuesday. By the following Monday after that, after only a few hours sleep the night before, I once again took her back to A&E. They sent her back to the children's hospital who hurried the IVU through, it showed nothing. We saw another doctor from a different team that evening, she wondered if it might be a hernia, and so she was admitted overnight so she could be observed and see the surgical team again in the morning. She ended up staying for a week.
On the first night there, the Monday night, we finally got to sleep about 1am, the 2 of us curled up and sitting upright, in the hospital bed. She slept fitfully for 3 hours. By 4am we gave up trying to sleep and watched the day gradually waking up Brighton through the rather impressive view from the hospital windows.
I was supposed to be sitting an exam for my Diagnostic Imaging degree in London at 11am, that wasn't going to happen.
A doctor swooped by late morning, with a gaggle of juniors in tow, announced to them and the whole ward all of Ellie's medical history, prodded her in the stomach, declared wistfully that it wasn't a hernia or any other surgical issue and swept out again, the gaggle hot on his heels. Another doctor came to see her, we recognised this one from when she had been ill as a toddler, he was a paediatric gastroenterologist. His thoughts were that she was suffering an impaction of the bowel due to it being affected by the initial virus, and that she needed her stomach and intestines flushed through. It didn't quite fit with her symptoms (a constant pain in her upper left side, varying in severity, but by this point always there), but we bowed to his superior knowledge and allowed them to proceed with the treatment, which turned out to be pretty horrific.
About 2pm a nurse came and gave Ellie a sedative. Ten minutes later, Ellie was behaving in a both very amusing, and very disturbing manor. Her head lolled, she talked nonsense, and then she fell asleep. A lovely, calm, restful sleep, the like of which I hadn't seen her in in weeks. Then the nurses came, 3 of them, tube at the ready, it was time to get down to business. The nurse assured me that however unpleasant this was going to be for her, because of the sedative, she was highly unlikely to remember any of it. I doubted her at the time but thank god, it did turn out to be true.
I had to help hold her down. They started passing the tube down her nose as she slept, but of course she soon woke up, wretched and vomited the tube out, she was highly distressed. She kept screaming that she couldn't bare the feeling and begged us to stop. If it had to be done though, to make her better.
We had talked about what the procedure would entail for her before she was given the sedation, and whilst she wasn't happy about it, she was weak and tired and willing to go along with anything at this point that might take the pain away.
Eventually we got the tube in, she hated it, understandably, I know I would.
Over the next 24 to 48 hours they fed a medication called Klean-Prep into her stomach via the tube, designed to break down everything in the stomach and flush it through. As they increased the flow of into her stomach on the second day, it started making her sick. I won't go into to much detail about this process, needless to say it was grim. Eventually, the wholly traumatic experience was over, and to our relief, the pain had reduced significantly, and now at least she was able to sleep at night again.
But the pain was still there.
They kept her in hospital for a few more days. Nobody seemed to know what to do about the fact she was still in pain. The gastroenterologist came briefly on 2 more occasions and assured us that the pain would settle soon, she just needed to give it time. He suggested we tried to get her to eat more and move about more, and we followed his advice. After a week of having been in hospital we were told she was being discharged, that she would recover better at home and that she just needed time. We were told this at 11am, at 10am a nurse had given Ellie some paracetamol for pain relief. By 2pm the pain relief was wearing off and we were still waiting for for her medications to come back from pharmacy so we could go home. I asked the nurse if Ellie could have some more pain relief, she said her drug charts had gone to pharmacy so she couldn't give her anything, and advised to just hang on a little longer...
I asked the nurse who was caring for her for pain relief on several more occasions that afternoon, she said she was sorry but there was nothing she could do. I asked if i could at least go to the hospital shop, buy some paracetamol, and give it to her myself, but she advised against that too, and kept reassuring us that any moment now her medication would arrive and we would be able to leave. By 6pm Ellie was in agony and we were no closer to leaving. I tearfully asked another nurse how long she thought it would be before Ellie's prescription came back, as she'd had no pain relief since the morning as her charts had gone to pharmacy, the nurse said her charts hadn't gone anywhere and immediately sorted her with a large dose of painkiller. Her dad arrived to pick us up. I'd tried to get Ellie walking that afternoon, but she was bent double in pain and became really distressed and begged to sit down again, she wasn't going to be able to walk out the hospital. Eventually, we found a nurse and told her we were leaving, and that we would return to the hospital later in the evening to pick up the meds we'd been waiting all day for. Her dad had to carry her to the hospital foyer, then he went to get the car, to bring it round to the hospital entrance while we waited. The receptionist came over, she couldn't understand why we were taking our daughter home when we were in such obvious pain, we said we didn't really know what was going on or what to do, she advised us to take our child to another hospital. My mother was there, she lives in Cornwall but had come to stay with me to help look after my older daughter and keep the house ticking over, so I could concentrate on Ellie. Mum was crying, she was angry and frustrated and frightened, we all were. When her dad pulled up in the car outside me and mum had to walk her out slowly, one holding each arm, Ellie was crying, people were staring at us, I started crying too. On the journey home I sobbed uncontrollably. That day was just hideous.
Back home we carried on in pretty much the same was as we had before the hospital stay. We gave it another week, we tried to get her to eat more, tried to get her moving more, it was a struggle but we persisted, yet there was still no change. Every morning she woke with the pain that became gradually worse as the day went on, and was particularly bad after eating. By night it was really bad and stopped her getting to sleep, and when she did sleep, it was restlessly.
So to cut a very long story slightly shorter that is pretty much still where we're at now. There was one more trip back to hospital about a week after she first came out. There they took us to one side and asked us lots of questions about her mental health, I desperately tried to impress that she had been happy at home and school before all this started, that nothing had changed in her life just prior to the illness, and that she was more keen than anyone to get better. They kept her in overnight for "observation", but there was no-one about to observe her, as with the previous trip it was just me and her, in a hospital bed, the nearest other healthcare professional down the end of a long corridor.
The next morning a different doctor cam to see us. He had a good bedside manor, was warm and friendly and approachable, but his mind had already been made up. By this time it was obvious that as their tests had come up with nothing, they didn't believe that there was anything that couldn't be fixed by a "now pull yourself together" attitude. Maybe they think she's enjoying the attention, maybe they think she's being bullied at school, maybe they think we are encouraging her illness. I don't know, I don't even care anymore, I don't even need to know what's causing it, I just want it to go away.
Whatever is happening inside her, be it physical, mental, or most likely, a bit of both, she has been, and still is, in A LOT of pain. I have helplessly watched her suffer, day after day, I have slept (or at least tried to) with her night after night and seen her misery. She's grumbled and whinged and moaned and sobbed. She's begged for pain relief. She's angrily demanded that it "JUST GO AWAY NOW!". But here we are, 8 weeks on, Ellie still in pain, and we're still none-the-wiser as to what's going on or how to make it go away. We saw the nice doctor in outpatients again this week, he has put her on Amitripyline, a drug that helps reduce the symptoms of nerve damage, and is going to try and get her an appointment with a child psychologist. Not sure if either of these things will help but am willing to try anything, and have to appear willing to go along with each new theory as it arises, you never know, one day we might hit on the right one...
Once again, everyone you talk to has their opinion on what it might be, what you should do. You imagine they're probably thinking that you're doing something wrong, that they'd handle it differently, better. You wonder if they are secretly thinking it's all your fault. Secretly, you think it's all your fault...
Talking about it is good though, people's stories of similar things that happened to them or to someone they know helps give you ideas of avenues for further exploration, or hope that while things might be bad now, this could all just disappear as quickly as it materialised.
Anyway, I don't really know why I wrote this, it's not the most interesting blog ever and it certainly isn't funny, but I just needed to record my experiences I suppose. Ellie hasn't been to school in nearly 2 months now, apart from the 2 hours that we took her in for on her birthday as that was what she said she wanted to do more than anything. She had a brilliant time but she sure did pay for that exertion in the evening, lying bent double at the end of her bed til 3am, sobbing that her birthday was now ruined.
Where do we go from here? How long will it go on for? What do I do about work? When am I ever going to make time for her older sister? Who can I turn to for support?
So many questions.
Answers on the back of a postcard please....
P.S. The medication that we waited so long to come back from the hospital pharmacy for, turned out to contain a packet of paracetamol and some laxatives.
So this is why i'm here. A need to express my frustrations, an outlet for my fear and stress and bewilderment. I guess it might help, it's worth a try. Also, just to share my experiences of dealing with doctors and hospitals, and coping (or not) with a kid that is unwell day in, day out, for weeks on end.
I have 2 daughters, Jo, who is now 15, and Ellie, who is 11.
Jo is a very healthy girl, always has been. I remember once, when she was about 5, she caught a really nasty virus, and I knew it was bad, mother's instict told me. I called the doctors eventually, when I was really worried. I was at home with her alone with no transport and they said they didn't do home visits for children, I could understand why. Her dad came home and we took her in to the surgery. The doctor said she'd seen 17 other sick kids that day and that mine was the only one that had obviously needed antibiotics. My insticts were right.
That was the only time Jo was ever really ill.
Ellie was a healthy baby. A very laid back kid. We had been worried that she might inherit her dad's many allergies, but she seemed fine, not a problem in sight, until she was nearly 3. Then just as we were starting to potty train her she developed a very severe nappy rash. She became terrified of pooing, it made her ill.
2 years of pain ensued. 1 week in every 3 spent in screaming agony. She had several stays in hospital, but she got better, eventually, although it was a long and tough process. By 5 she was well again.
At about 7, she started to develop eczema.
Little bits to start with, the odd sore patch here and there. But soon the little sore patches became big sore patches, and the minor discomfort became major irritation. And then terrible painful skin lesions and severe flair ups began. For the next few years our lives were dominated by trips to the outpatients department at the children's hospital, routines and regimes of creams and baths and bandages....
When your kid is ill everyone has an opinion. The feedback from people is both welcome and unwelcome in equal measures. Either way it is very much forthcoming. You are grateful for and cling to little nuggets of information that might be useful, something, anything, that might just be that thing that makes the difference. You eagerly, hopefully, try the suggestions that might just be the answer?! In this case, unfortunately, they never were. Nothing much helped, except some pretty strong steroid creams prescribed by the doctors that is.
She grew out of it. Gradually, between the ages of 9 and a half and 10 and a half. Life had never been so good for her!
Ellie is a happy kid. In spite of it all she always has been. She is popular at school, lots of friends, never been demanding, always done well in anything she set her mind to, and I doubt she'd have been particularly bothered if she hadn't. Life plodded on, she was content.
On the 18th May this year I walked into her room and she said
"I've got a tummy ache."
I was ill myself. I had developed stomach pains and nausea the previous evening, so the natural assumption was that we both had the same illness. I work in a hospital, I am surrounded by sick people, and even supposedly healthy people who are infectious germ carriers. I come into contact with so many people each day, it's inevitable that i'll pick up bugs on a regular basis.
Over the course of the next few days I suffered the most, I felt flu like (but not quite bad enough for it to be flu, after all, i'm not a bloke) for a couple of days, and then recovered gradually over the couple of days following, and then I was back to my normal health. Ellie however, did not progress from the virus in the same way as I did.
In the first week she felt very nauseous, with intermittent bouts of stomach pain. By the end of that week her stomach pain was the most dominant symptom, with the nausea subsiding.
She still couldn't go to school. The pain persisted, coming and going but getting ever more frequent. By the end of the second week the pain was pretty much permanent. We went to see the doctor, he said that sometimes a nasty bug can be hard for a kids stomach to recover from and put her on antacids, but they didn't seem to help at all.
I started getting really worried. You assume that, even if a bug is persistent, even if it is a particularly bad one, that after a couple of weeks there should be some sign of improvement, but there wasn't. My mind worked overtime, I feared all those things that you dare not think might be happening to your child, we were in a dark place.
She was getting worse.
Her dad took her back to see another doctor. He took some time off work, I had taken enough. She hadn't been at school for nearly 3 weeks, I had to show my face at the work for a few days for fear of losing my job. Being parted from my increasingly pained, distressed and clingy child was just awful, it felt completely unnatural. The doctor sent her to the local children's hospital for blood tests. She had them done, they all came back normal.
She was just getting worse. The fear of what might be going on inside her was all consuming, watching her in pain was getting unbearable. At a loss to know what to do i took her to A&E. The doctor there said they wouldn't see her in the children's hospital unless they thought her life was at immediate risk, and despite her obvious pain he didn't believe it was. He sensed our desperation and found a way to get her seen in the kid's medical assessment unit by insisting she needed to be seen by the surgical team, just to be sure that her problem wasn't something that would need surgical intervention. We spent the next 12 hours in the children's hospital, having test after test, seeing doctor after doctor, they were thorough. Eventually, after all blood tests came back clear, and the only anomaly they found was microscopic haematuria (a very small amount of blood in the urine), they thought she might have contracted the H.Pylori virus, and sent us home with Gaviscon and Ranitidine and more tests pending.
The medications didn't help. We'd been in hospital on the Friday and by Monday there was no sign of improvement, in fact, things were getting even worse. We went back on Tuesday, they found blood in her urine again and became and at that point considered that she might have a kidney problem. They sent her for an x-ray, it showed something that may or may not have been calcifications in her ureter, so the paediatric radiologist that evaluated the image decided to do an ultrasound there and then. It showed nothing unusual. Having worked in an imaging department for a few years, having taken x-rays myself and seen ultrasounds, and having friends who are sonographers, I was aware of the limitations of medical imaging. I knew that while they would be mostly able to get a reasonable idea of what was going on in her kidney's, they wouldn't be able to see her ureters. So it came as no surprise when they said that they would like to do an IVU to get a better idea of how her urinary system was functioning, but that wouldn't be possible for at least a week. We went home again.
By this point she was hardly eating at all, just a yoghurt here, half a packet of crisps there, but most days she refused to eat anything at all because it made the pain worse. And she couldn't hardly move about, just sat around, she became so weak and dizzy I had to help her just to get to the bathroom and back. When she walked she walked slowly, doubled up in pain, clutching the upper left side of her tummy.
It all gets blurry. I was getting so tired at this point. The pain had evolved from being bad up until she fell asleep at night to keeping her from getting to sleep at night until very late. And she was waking up early. And making griping and grunting noises all through the night as she slept. And writhing and kicking out in her sleep.
We'd first been in hospital on the Friday, increasingly concerned at her lack of progress, I took her back to the hospital on the Tuesday. By the following Monday after that, after only a few hours sleep the night before, I once again took her back to A&E. They sent her back to the children's hospital who hurried the IVU through, it showed nothing. We saw another doctor from a different team that evening, she wondered if it might be a hernia, and so she was admitted overnight so she could be observed and see the surgical team again in the morning. She ended up staying for a week.
On the first night there, the Monday night, we finally got to sleep about 1am, the 2 of us curled up and sitting upright, in the hospital bed. She slept fitfully for 3 hours. By 4am we gave up trying to sleep and watched the day gradually waking up Brighton through the rather impressive view from the hospital windows.
I was supposed to be sitting an exam for my Diagnostic Imaging degree in London at 11am, that wasn't going to happen.
A doctor swooped by late morning, with a gaggle of juniors in tow, announced to them and the whole ward all of Ellie's medical history, prodded her in the stomach, declared wistfully that it wasn't a hernia or any other surgical issue and swept out again, the gaggle hot on his heels. Another doctor came to see her, we recognised this one from when she had been ill as a toddler, he was a paediatric gastroenterologist. His thoughts were that she was suffering an impaction of the bowel due to it being affected by the initial virus, and that she needed her stomach and intestines flushed through. It didn't quite fit with her symptoms (a constant pain in her upper left side, varying in severity, but by this point always there), but we bowed to his superior knowledge and allowed them to proceed with the treatment, which turned out to be pretty horrific.
About 2pm a nurse came and gave Ellie a sedative. Ten minutes later, Ellie was behaving in a both very amusing, and very disturbing manor. Her head lolled, she talked nonsense, and then she fell asleep. A lovely, calm, restful sleep, the like of which I hadn't seen her in in weeks. Then the nurses came, 3 of them, tube at the ready, it was time to get down to business. The nurse assured me that however unpleasant this was going to be for her, because of the sedative, she was highly unlikely to remember any of it. I doubted her at the time but thank god, it did turn out to be true.
I had to help hold her down. They started passing the tube down her nose as she slept, but of course she soon woke up, wretched and vomited the tube out, she was highly distressed. She kept screaming that she couldn't bare the feeling and begged us to stop. If it had to be done though, to make her better.
We had talked about what the procedure would entail for her before she was given the sedation, and whilst she wasn't happy about it, she was weak and tired and willing to go along with anything at this point that might take the pain away.
Eventually we got the tube in, she hated it, understandably, I know I would.
Over the next 24 to 48 hours they fed a medication called Klean-Prep into her stomach via the tube, designed to break down everything in the stomach and flush it through. As they increased the flow of into her stomach on the second day, it started making her sick. I won't go into to much detail about this process, needless to say it was grim. Eventually, the wholly traumatic experience was over, and to our relief, the pain had reduced significantly, and now at least she was able to sleep at night again.
But the pain was still there.
They kept her in hospital for a few more days. Nobody seemed to know what to do about the fact she was still in pain. The gastroenterologist came briefly on 2 more occasions and assured us that the pain would settle soon, she just needed to give it time. He suggested we tried to get her to eat more and move about more, and we followed his advice. After a week of having been in hospital we were told she was being discharged, that she would recover better at home and that she just needed time. We were told this at 11am, at 10am a nurse had given Ellie some paracetamol for pain relief. By 2pm the pain relief was wearing off and we were still waiting for for her medications to come back from pharmacy so we could go home. I asked the nurse if Ellie could have some more pain relief, she said her drug charts had gone to pharmacy so she couldn't give her anything, and advised to just hang on a little longer...
I asked the nurse who was caring for her for pain relief on several more occasions that afternoon, she said she was sorry but there was nothing she could do. I asked if i could at least go to the hospital shop, buy some paracetamol, and give it to her myself, but she advised against that too, and kept reassuring us that any moment now her medication would arrive and we would be able to leave. By 6pm Ellie was in agony and we were no closer to leaving. I tearfully asked another nurse how long she thought it would be before Ellie's prescription came back, as she'd had no pain relief since the morning as her charts had gone to pharmacy, the nurse said her charts hadn't gone anywhere and immediately sorted her with a large dose of painkiller. Her dad arrived to pick us up. I'd tried to get Ellie walking that afternoon, but she was bent double in pain and became really distressed and begged to sit down again, she wasn't going to be able to walk out the hospital. Eventually, we found a nurse and told her we were leaving, and that we would return to the hospital later in the evening to pick up the meds we'd been waiting all day for. Her dad had to carry her to the hospital foyer, then he went to get the car, to bring it round to the hospital entrance while we waited. The receptionist came over, she couldn't understand why we were taking our daughter home when we were in such obvious pain, we said we didn't really know what was going on or what to do, she advised us to take our child to another hospital. My mother was there, she lives in Cornwall but had come to stay with me to help look after my older daughter and keep the house ticking over, so I could concentrate on Ellie. Mum was crying, she was angry and frustrated and frightened, we all were. When her dad pulled up in the car outside me and mum had to walk her out slowly, one holding each arm, Ellie was crying, people were staring at us, I started crying too. On the journey home I sobbed uncontrollably. That day was just hideous.
Back home we carried on in pretty much the same was as we had before the hospital stay. We gave it another week, we tried to get her to eat more, tried to get her moving more, it was a struggle but we persisted, yet there was still no change. Every morning she woke with the pain that became gradually worse as the day went on, and was particularly bad after eating. By night it was really bad and stopped her getting to sleep, and when she did sleep, it was restlessly.
So to cut a very long story slightly shorter that is pretty much still where we're at now. There was one more trip back to hospital about a week after she first came out. There they took us to one side and asked us lots of questions about her mental health, I desperately tried to impress that she had been happy at home and school before all this started, that nothing had changed in her life just prior to the illness, and that she was more keen than anyone to get better. They kept her in overnight for "observation", but there was no-one about to observe her, as with the previous trip it was just me and her, in a hospital bed, the nearest other healthcare professional down the end of a long corridor.
The next morning a different doctor cam to see us. He had a good bedside manor, was warm and friendly and approachable, but his mind had already been made up. By this time it was obvious that as their tests had come up with nothing, they didn't believe that there was anything that couldn't be fixed by a "now pull yourself together" attitude. Maybe they think she's enjoying the attention, maybe they think she's being bullied at school, maybe they think we are encouraging her illness. I don't know, I don't even care anymore, I don't even need to know what's causing it, I just want it to go away.
Whatever is happening inside her, be it physical, mental, or most likely, a bit of both, she has been, and still is, in A LOT of pain. I have helplessly watched her suffer, day after day, I have slept (or at least tried to) with her night after night and seen her misery. She's grumbled and whinged and moaned and sobbed. She's begged for pain relief. She's angrily demanded that it "JUST GO AWAY NOW!". But here we are, 8 weeks on, Ellie still in pain, and we're still none-the-wiser as to what's going on or how to make it go away. We saw the nice doctor in outpatients again this week, he has put her on Amitripyline, a drug that helps reduce the symptoms of nerve damage, and is going to try and get her an appointment with a child psychologist. Not sure if either of these things will help but am willing to try anything, and have to appear willing to go along with each new theory as it arises, you never know, one day we might hit on the right one...
Once again, everyone you talk to has their opinion on what it might be, what you should do. You imagine they're probably thinking that you're doing something wrong, that they'd handle it differently, better. You wonder if they are secretly thinking it's all your fault. Secretly, you think it's all your fault...
Talking about it is good though, people's stories of similar things that happened to them or to someone they know helps give you ideas of avenues for further exploration, or hope that while things might be bad now, this could all just disappear as quickly as it materialised.
Anyway, I don't really know why I wrote this, it's not the most interesting blog ever and it certainly isn't funny, but I just needed to record my experiences I suppose. Ellie hasn't been to school in nearly 2 months now, apart from the 2 hours that we took her in for on her birthday as that was what she said she wanted to do more than anything. She had a brilliant time but she sure did pay for that exertion in the evening, lying bent double at the end of her bed til 3am, sobbing that her birthday was now ruined.
Where do we go from here? How long will it go on for? What do I do about work? When am I ever going to make time for her older sister? Who can I turn to for support?
So many questions.
Answers on the back of a postcard please....
P.S. The medication that we waited so long to come back from the hospital pharmacy for, turned out to contain a packet of paracetamol and some laxatives.
Sunday, 10 July 2011
In the beginning...
So this is my first ever blog. There's lots to say, but for now, let's see if this works.....
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