Rare Disease Day

Things seem to be, ever so slowly, spiralling out of control. Ever since the start of December, my elder daughter (the one diagnosed with IIH) has gradually been getting worse. Two visits to the neurologists since Christmas have seen her medication upped to the maximum dose, which seems to be having little or no effect at all. IMG_0411Days off school seem to be the latest kick in the teeth, and given that she only attends 4 half days a week anyway, missing what little she does normally manage feels like the final insult. Not a day goes by that I don’t see her suffer in some way, shape or form. Last week, her school was having a TD day on the Monday after half term, and so with her sister back to school, I suggested we could go out for the day. She told me she’d like to go for a walk along one of our favourite beaches. FANTASTIC! A day out for me instead of being stuck inside, chained to the computer. But it never materialised. Waking up early on Monday morning, it was clear that her head was bad and that she would be unable to go out. Had it been a school day, she wouldn’t have been able to attend. It breaks my heart, it really does. The same thing happened this morning. With her mother having had a particularly busy week (normally she works bloody hard…this week seems off the scale), again we’d decided a walk on the beach was just what the doctor ordered. But once again she was unwell, and has remained so right throughout the day, pretty much. I know how much she’d like to go out, walk along the beach, chase after her sister, race against the waves, climb and jump all over the rocks, take in all the wonderful sea air. All of which makes things even harder. Reminded all week from social media that today is rare disease day, it’s hard not to spare a thought for others in a similar condition to my daughter. While this post is but a drop in the ocean, if it makes just one more person aware of IIH then I hope it’s been worth it.

Currently, with the medication dosage on maximum, we’re waiting on a cancellation at Southampton hospital for her to have an MRI of her head, a lumbar puncture, and then another MRI, all in the same day. IMG_0525This is to see if the veins in her head are in any way, shape or form, flattened. My understanding is that if they are, there are things they can do about it. But given exactly what she went through last time she had a lumbar puncture (over 10 weeks before she could walk properly, not to mention 2 blood patches) the fact that she’s down to have another, is more than a little worrying. So at the moment, it’s waiting and hoping for the cancellation to come round, and the start of what I’m sure will be a very, very trying day for all concerned.

Trying Time

Sorry…….it’s been a while. Life, for whatever reason, seems to constantly get in the way.
Christmas has been and gone. While we had, for the most part, a great Christmas day, it was marred by my elder daughter feeling very ill in the evening with her IIH (Idiopathic Intracranial Hypertension). We very nearly called the hospital, but in the end, didn’t.

A Rare Day Out At Hengistbury Watching The Sun Rise

A Rare Day Out At Hengistbury Watching The Sun Rise

The following day (Boxing Day) we were all as a family supposed to be going up to Burton to see my mother-in-law, but because of how unwell my eldest was, we decided it would be best for her to stay here with me, while my wife and my youngest journeyed north.
Looking back, it was a good call, as my eldest became very ill later on Boxing Day, which culminated in us having to go to the hospital, eventually staying over into the next day.

Things were not going well. To top off the taxi ride to the hospital, the uncomfortable fold down bed, the continual worry and the lack of sleep, I was at the time struggling with two broken ribs, picked up in a hockey match on 20th December. I should point out that I’m a stupid man, who is seriously too old to continue to chase the stupid ball around with his stick on the pitch, however much I enjoy doing so. My ribs have pretty much healed now, but I have yet to rejoin my team mates and take to the pitch. Soon!
We managed to struggle through the trip to the hospital but I’m not really sure how, and made it to the appointment with the neurologist two days later.

My darling daughter had the dosage of her medicine increased, with a view to seeing if that would make any difference. It hasn’t. Gradually, from sometime around September, she’s been getting worse. The state of her one overall headache, which she had had for a year and a half now, has gone up, with December being a particularly bad month. The headaches have started to wake her up in the night because the pain’s been so bad, and she’s been so rough she’s had to have days off school, on top of the fact that the best she can do at the moment is four half days anyway. Our next appointment with the neurologist is this coming Monday, and as far as I’m aware a change of medication is imminent. I find it difficult to know what to think. On one hand, a change is good because something HAS to be done. Day in, day out I watch her struggle, sometimes from the moment she gets up, sometimes much later on in the day. She does try to hide it, but as someone who spends the most time with her, I would say I’m pretty good as spotting when she does. It breaks my heart to see her constantly in so much pain, that and the fact that she gets down when she can’t go to school and see her friends. She deserves to be a normal child, doing normal things…spending time with her friends at and outside of school. But it’s difficult with everything that she’s going through. As parents we try our best to support her and let her do the things she wants. But it simply isn’t always possible, leading to frustration on both her, and our part.
The bad part in the change in medication is that as far as I’m aware, it’s just one step closer to her having to have a shunt fitted into her head.

Unexpected Arrival Of Snow In Early Febuary

Unexpected Arrival Of Snow In Early Febuary

Nobody wants that, not the neurologists, us her parents, or indeed her. The further down this road we go though, the closer the spectre of that treatment gets. I hope with all my heart it can be avoided. Some of the IIH forums that we belong to very often show other children with shunts, normally having issues, and I suppose because it’s a forum, then you’ll mainly see the bad things and it all scares the living daylights out of me. Many doctors have already told us that most children go on to live a normal and fulfilling life with a shunt fitted, but I find it very hard to believe that. Other doctors have told us a very different story. I’d be lying if I said it didn’t constantly play on my mind.
January came and went, with various bugs ravishing members of the Cude household. My lovely younger daughter was hit by something and became very ill for a week, involving trips to the hospital and doctors. In fact, three hospital trips in 24 hours, which if I’m not mistaken, is something of a record for us. This all happened in a week where they were doing particularly wonderful stuff at school and she was devastated that she couldn’t go in. It always makes me incredibly proud that both my children love to go to school and work so hard when they are there. I think they probably get that from their gorgeous mother.
As for me, well I’ve been working hard in the small moments I can find to do just that. My third book, ‘Bentwhistle The Dragon in A Twisted Prophecy’ is just being edited, I’m trying to sort out the cover for it and I’ve started writing the fourth book, the title of which has already been decided but I’m not going to reveal it, not just yet, anyway.

My Second Book. Now Available in Paperback

My Second Book. Now Available in Paperback

I have to say, of all the parts that go into putting a book together, the editing is the part I hate the most. When I finish writing a book I’m always so excited and a little relieved, but then the thought of editing it always brings me down. I know how necessary it is, and for the most part I’m a perfectionist, like most other writers I suppose, wanting my work to be perfect, without a single grammatical error. It’s amazing how, since I’ve been doing all of this, I’ll read either a new book or something from my collection, and find spelling mistakes in mainstream book titles by very famous authors. I find it mindboggling. And I’m not just talking one or two mistakes either. I won’t mention the authors but if I did, rest assured you’d know them. It makes me wonder how such a thing is even possible. Surely they and the publishers have a host of different people proof read their work before publication…….they simply must do. So how do these errors slip through the net? I’d love to know. And do they change the mistakes once they’re pointed out, in say later revisions of the books? I find it fascinating. How dull am I? Don’t answer that, it was rhetorical.
Anyhow, that’s where I’m at. Editing as fast as I can, trying to sort out the latest cover, while writing the fourth instalment when time allows, all the time looking after two fabulous children and one wonderful wife. If time could somehow find a way of wrapping itself around me and allow me a little more of it to do the things I love, writing, hockey, etc, that would just be super duper. So if you’re listening time……….you know what to do.
Until next time.

Life, IIH And Of Course Hockey!

I swear in my life……….I’ve never worked so hard. And yet I still can’t understand exactly what it is I’m doing, or exactly where all the hours go. I’m up at about 6am, usually before, and don’t go to bed until around 11pm. I might get an hour or so to relax during the evening………watching television, reading, etc……..but for the most part, I’m working in some way, shape or form. Anyway, whine over, back to how things are going.

Nearing the end of the last school term, just before the summer holidays, my eldest daughter, the one who’s been unwell, and diagnosed with IIH (Idiopathic Intracranial Hypertension…it is IIH awareness month. Please take a look here) had worked really hard to get to the point where she was able to go into school (it was the last few weeks of her time there…..so not much work, but still quite an achievement given the fact that she’s had one constant headache since the start of October last year) for four days out of five. While I could still see her struggle (with things like her reading, and P.E.) it was also noticeable just how happy she was to be back at school with her friends.

The kids river dipping at Hengistbury Head

The kids river dipping at Hengistbury Head

Both my children love going to school, and always have done, something I’m incredibly proud of, and immensely grateful for. In fact my youngest has already picked out the enrichment activities that she’s going to do when she moves up schools, to the one my eldest daughter has only just started, and that’s not for another three years yet………….CRAZY CHILD!! Where was I? That’s right………how things were, in the last few weeks of term, going so well. My daughter had come off the large dose of steroids she’d been on (something of a nightmare…….both being on them, and probably more so coming off them), while continuing with the Acetazolamide that she’d been on since much earlier in the year. I suppose, up until that point, the pain from her headache had gradually been coming down (from a 7/8 out of 10 to the point where it had got to just under a 6 out of 10) but it seemed to have reached a plateau, with no improvement reported. Just to let you know, I’m a mean daddy………I ask her every day about her head……how much it hurts, what the score is out of ten, has it been any better/worse during the day, if so when and what was she doing. I’m sure she gets fed up with me doing this, in fact I know she does, but I think it’s important to do, to recognise what things make it worse, and if anything at all makes it better. I suppose so far, the only thing that really makes it worse is something she really loves to do……..READING! Which given she’s just started at secondary school, is really not a good thing. Back to the summer.

On breaking up from school, I suppose we had a week or so without really doing very much. We had one day at Moors Valley country park, losing ourselves in the forest, taking on the play trail, hunting dragon and damsel flies, all with great success. The children and I had a wonderful day. But really that was about it, for the most part the kids chilled out, and I got on with my writing and social media work. It was all going so well. Of course though, it didn’t last.

Ten days into the holiday, my eldest wasn’t feeling very well, unusual really. She’d been fine the day before, and gone to bed the previous night with as much of a smile as she ever has. But the following morning her head hurt, the light hurt her eyes, and she didn’t want anything to eat. This went on until early afternoon, when yes………you’ve guessed it, we ended up back at the hospital. As per all our other visits, the staff at Salisbury District Hospital were magnificent, from the paediatricians, to the nurses, to the eye clinic staff………everyone. But it was a body blow to say the least to have to be admitted again as an emergency, one from which I’m probably still reeling, one from which my overwhelming memory is pushing her around the hospital in a wheelchair, because she was so unwell she just couldn’t walk. They ran all the tests, checked her eyes……….finding papilloedema, the swelling from raised pressure behind them. The long and the short of it is that there were conversations with the neurologists at Southampton hospital, with a decision being reached that she should restart on the steroids. Not a good day, followed by quite a few more. The summer holidays that started so well, fell away like a lemming over a cliff. As a family we stayed in for the most part, helping her rest and recover, with the odd day at Hengistbury Head or shopping. She had recovered, to some degree anyway. But always on our mind was what lay ahead, the starting of a new school on the 1st September.

It didn’t take long for the first day to come round. Even without all the illness and everything, it still would have been important, a landmark.

Jaina in her school uniform on her first day

Jaina in her school uniform on her first day

But with what she’s still going through, doubly so. The first day was a success, with just her year group in school, she had a great time and got to know some of the other girls in her class. It wasn’t the first time she’s been there, as there have been a few taster days and evenings towards the end of the last school year. But with such a big step up comes more responsibility and more work, as well as all the fears and worries of starting a new school and being in an unfamiliar environment, all of which lead me to worry even more. But one of the positives from all of this, is just how wonderful, flexible and supportive the school have been about it all. I can’t begin to praise them enough, and long may it continue. Of course they want her to succeed and for fill her potential, gaining great exam results along the way, much as we her parents do. But more importantly to me anyway, is her personality and happiness, something the school at this point, seem to understand, for which I am very grateful.

 I suppose over the last couple of weeks she might have been in to school about half the time. It’s hard from my point of view to know whether I’m pleased about that or not. In many ways it’s disappointing it’s not more, given how well she was doing during the last few weeks at her old school, but given that for most of this year she’s been so unwell, it’s been hard to imagine her being well enough to go full stop. So my feelings on the subject vary day by day……..probably even hour by hour. It hasn’t been helped by hospital appointments. Neurologists last Friday…………..the only new thing is she’s started a three month course of Iron, and another eye appointment at Salisbury later on today.

With all of this going on, getting my eldest to her new school over the other side of town a tsome ungodly hour, getting her sister to school, swimming, zumba….oh yes, ZUMBA! Which by the way, she absolutely loves, my wife working hard, at least a couple of days a week going off on the train to London, Bristol, Exeter, etc, at ungodly hours, and not returning until late, my life feels like it’s constantly spinning, a merry go round zipping round at speed,  with me, unable to get off. As if that weren’t enough, there are all the jobs at home….replacing bricks in walls, painting front doors, all the usual, as well as the writing (trying hard to complete the third Bentwhistle book), never ending social media and all the housework. Wow……it’s hard enough writing about it, let alone doing it all.

And as if all of that wasn’t enough, I’ve started playing hockey again, after my forced absence of last season (I did help with coaching the juniors). As well as playing mixed hockey throughout the summer, with the ladies’ 5th XI and the men’s 4th XI, I have attended training for the last few weeks, and agreed to help with some ladies’ coaching (not entirely sure how long that will last…….due to being old and aching rather a lot), not to mention playing half a game on Saturday, and umpiring the other half. I find it’s the only time I can relax, a hockey ball on the end of my stick………..it makes it all go away, briefly anyhow. So we’ll see how long it lasts, with my aching body constantly hurting from all the exercise, and my mind swimming from all the places I have to be, and just when I have to be there. Anyhow, got to go. One child to drop off at school, one to take to the hospital. Already tired from being up at 5.30am, working on the computer. Roll on bedtime, that’s what I say. Until next time.



Lulled Into A False Sense Of Security

4am and here I am………….typing at the computer, the few hours of sleep I’ve had all but deserted me now. Where has it gone so wrong? Things seemed to be going so well, but as I’m constantly reminded, disaster never seems particularly far away. I thought the constant nightmares that continued to haunt me had started to leave, be pushed away into some forgotten corner inside my very spacious head, but not so, and with good reason. awful day, the one whose anniversary is coming up in something like seven or so weeks’ time.

Something completely obtuse can open the floodgates. At the start of June I was very kindly invited to have a run about at the mixed hockey that has been a regular fixture over the last couple of years between the lower men’s and ladies’ teams, every two weeks over the course of the summer. Although I feel older than Noah himself, every molecule inside me is always desperate to pick up my stick and knock a ball about. So of course I turned up to the first session, giddy like an excited little kid. Faces old and new were there, more than required, allowing oldies like me to come off and have a rest during the four or five twenty minute sessions. With the teams split in two, one in yellow, the other in orange bibs, (something of which there weren’t enough of……so I donned my ancient orange Salisbury Mixed XI top from my stick bag, that is decades old) I set about trying to remember all of my extremely rusty skills, and pushing my knackered old body to the very edge of its limits, which didn’t take long considering I was up against youngsters a third of my age. Still……….you can’t beat experience. Well, you can sometimes, but on quite a lot of occasions it has the ability to make an instinctive stunning reverse stick tackle, or the occasional good looking aerial ball, all seemingly out of nothing.

I digress. After the first session was up, an umpire for the second session was required. I volunteered (more than happy to have a little rest……given the heat and all) and duly made my way across to the far side of the pitch, whistle in hand. I’d only got a few steps, when it hit me like an onrushing freight train, so much so, that it was all I could do not to break into tears. Reaching the far side of the pitch, and with both teams still getting organised, I tried to rally my thoughts, push them to the back of my mind, but as hard as I tried, I just couldn’t shake the images of that day that came flooding back to me.

It was the shirt that started it off……….innocuous in itself, but the catalyst this time. I’d turned up in a blue shirt, but with me being put on the orange side, and there being not enough bibs, as already mentioned, I found one of my favourite hockey shirts, old as it might be, and thought nothing more of it. 003What I realised, or rather something in the back of my mind did, as I walked over to the far side of the pitch all on my own, was the last time I had worn that shirt, was that very fateful day at the start of October 2013, when hockey training with both my kids and when, more importantly, I had to rush my eldest daughter up to the hospital, something that turned into the worst day of my life (see Worst Day Of My Life post)

I won’t bore you with the details, but I can remember every single part of the day, and I was stuck in my hockey kit (and THAT shirt) for all of it, and some of the following day……..as I’d slept there overnight, with no change of clothes…. with the exception of my shoes, which I’d managed to swap for sandals. Anyhow, just remembering the last time I’d worn THAT shirt had a profound impact on me, and as I’ve just stated, it was all I could do not to cry, the feelings were so strong from the memories of that fateful day. Since then, I’ve attended all but one of the hockey sessions, and have always had the shirt in my kit back, but so far, have got away with not needing to wear it, despite it being one of my favourites.

Up until then, I had been starting to get sucked into thinking that everything was on the mend, that my daughter was going great guns, improving at a wonderful rate. She had started doing half days, and then the odd full day at school, and for the most part I accompanied her, listening to my youngest daughter’s class read, so that I could be about the school premises, in case my eldest was suddenly unwell, something that was necessary given that she was coming off steroids, and might well have needed an emergency injection of hydrocortisone, something I’d been trained to administer. It was all working out okay, and the school were fantastic about everything, with both children and staff alike delighted that my daughter was once again able to show her face. From then on things improved even more, and given the fact that this summer has been the end of her final year there, in the last two weeks of term she managed to attend pretty much everything going on, and as you might imagine…………there was a lot. From school plays, to leavers’ services, to class parties, concerts, etc, etc, you name it, it was going on, and happily, she managed to attend it. We kind of got through it successfully, managing between us to have the odd rest morning. It was both sad that she was leaving, but fantastic that she could attend at all, given what’s happened over the course of the last ten months.

So the end of school came and went, and last week was the first full week of the holidays. Given how hectic the last few weeks at school had been for everyone, mostly we stayed at home, with just one day out at the stunning Moors Valley Country Park near Ringwood. 104We arrived nice and early, as always, getting almost the whole forest to ourselves, and were able to leave just before lunch, just as it was getting particularly busy.

And so on to yesterday. Unusually, my eldest wasn’t looking right, or feeling well from the outset. Odd considering when she went to bed on Monday night, nothing was out of place or wrong. She complained of her head hurting more (something we haven’t heard in months), of the light hurting her eyes, and of just feeling unwell. All she wanted to do was lie on her bed in her darkened room. Hmmmmm…………..not good! With her mother off work on holiday, and with us having planned to go out, needless to say we didn’t, but stayed in, taking it in turns to watch over her. About mid-morning I responded to an email from one of my friends. In it I predicted that we would at some point during the day, end up at the hospital. A prediction that, disappointingly, came true.

The usual course of events unfolded, something that at one point I seem to recall being almost a bi-weekly event. The local hospital were, as usual, great, seeing us straight away……nothing too much trouble. She managed to get to the eye clinic so that they could check the pressure behind them (albeit with a rather dubious driver pushing her wheelchair……..me of course!). The staff in the clinic were fantastic……fussing over her, and putting a smile on her face for the first time during the whole day. The outcome was that the pressure behind her eyes seems to have increased…………bugger! (This is the quickest way to test for symptoms of IIH, the condition my daughter suffers from – check out the wonderful IIH Support website if you want to find out more about it.) So after going back to the ward, and with the great team of paediatricians communicating with the neurologists in Southampton, our knight in shining armour informed us that she would be starting back on a course of steroids again. Not something we or she wanted to hear, but something that we’d already predicted would happen, minutes before we were told. Fortunately, we were discharged, although I have to say, it looked touch and go whether she would be up to going home, for much of our time there. So here we are, what feels like back to square one almost. My waking and sleeping thoughts still haunted by that day, my daughter being chased down by something unforeseen, me…….unable to protect her. It shouldn’t be about me……….I know. But once again I feel so helpless. You sit and wait, hold her hand, push her around the hospital in the wheelchair, find her drinks, try and comfort her in every way possible………..but it never seems enough. I truly thought over the last few months that things were heading in the right direction, and with a new school year, and more importantly, a new school, looming on the horizon in September, we as a family had hoped that things were all heading in the right direction. But that’s not how it feels at this very moment. I hope as the one medical professional we trust above all others said, that it’s just a ‘blip’, but it doesn’t feel that way, not now, not when things seemed to be going so well.

So I suppose all we can do is wait, something I really, really hate. As I sit here now, the illuminated screen of the computer lighting up the room, daylight gently filtering through the sides of the curtains, I wonder what the coming weeks and months will bring, haunted by memories of that fateful day, the tentacles from it that still have hold of my daughter. 001The bright orange shirt is tucked away with my hockey sticks, just out of sight over my shoulder. I wonder if I should put it on, face my demons, or perhaps never wear it again. In theory it should make me stronger………just as picking up one of my hockey sticks does, but somehow this feels different, scary, frightening somehow. Oh well, off to see if sleep can claim me for a couple of hours. Wish me luck!


Idiopathic Intracranial Hypertension (IIH)

It’s been a while, at least since I’ve written about all of this, but it’s something that’s been affecting our lives, day in, day out, for about eight months now. My elder daughter has been diagnosed with Idiopathic Intracranial Hypertension (IIH). Check out previous posts under the life category under the tag cloud on the left hand side of my blog’s page. Anyhow, not a week seems to go by without a trip to the hospital in some way shape or form. Last week it was two……….what joy!
Firstly a trip to our local hospital in Salisbury, to see the wonderful paediatrician who’s been looking after my daughter all along. This, it has to be said, is the only appointment that I don’t really mind…in fact, I would go as far as to say I look forward to it. You know what it is you’re going to get. As I’ve mentioned before, the doctor is someone not only would you trust your life with, but more importantly, someone you’d trust the life of your child with. Professional, knowledgeable, obviously great with children (I assume that’s a must for the job) and importantly, someone who inspires trust. Not only are these qualities important to me, but to my daughter as well. She has described this doctor in the past, as the only one she really trusts. And when she said this to me, all I could think was, ‘I couldn’t agree more.’
Anyhow, the appointment was quite routine. He was pleased with how she was doing. He seemed to think she was progressing in the right direction, despite the fact that she’s still got her HEADACHE. (A headache that goes on for eight months and never, ever goes away, deserves to be written in capitals.) Now that she’s getting towards the end of her course of steroids, there are some different pills she has to have, and I have to be trained on how to give her a steroid injection, in case illness strikes. This was all a little bit of a shock, as no one had told us that part. We were under the impression that the steroids would come down, week by week, until she was totally weaned off. You would think this would be important enough to mention, particularly since she’s been ‘coming off’ if that’s the right description, the steroids for over two months now.
So all in all, a successful and about as enjoyable a hospital appointment as you could have.
Moving forward to Friday, the next hospital appointment was at Southampton with the neurologist in charge of my daughter. Not nearly so enjoyable this time, but then I could quite easily have predicted that. Let’s start with the only positive thing I came away with. They’re going to monitor my daughter’s eyes, checking for papilloedema on a regular basis, every four to six weeks. My understanding of this, is that it will act as an early warning sign, for any increase in pressure around her brain. Good news and something I heartily approve of and am very appreciative that they are doing.
That, however, was really the only positive I could take from the meeting, and came away feeling particularly frustrated. So much so, that I’m writing this at some ungodly time on Sunday morning, after having had a second night without very much sleep. Given her condition, my daughter has not attended school for all the time she has been ill, many months. Now she has spent a considerable amount of time in hospital over that period, or should I say hospitals. That aside, the main reason that she can’t go, is the simple fact that her HEADACHE simply won’t allow her to do the work. I can’t tell you how many times I’ve tried to get her to do just a taster of some school work at home, but she struggles so much, just to do very basic things. At the moment she’s better than she’s been since well before Christmas, but if she tries to do some maths for example (something I do try and get her to do on a regular basis) she might only manage about twenty minutes, by which time she’s totally wiped out for the next two hours or so. I’m not sure exactly what it is that does this, whether it’s the concentration required on top of the headache, or if it’s the focusing on the words that causes her to struggle so much. I sit and watch from a distance, to try and make sense of what she’s going through. It breaks my heart to see her like this on a daily basis. I feel cruel for making her even attempt such a relatively simple task (not for her) and worry about the long term effect it may have on her. My worry is, that if this is the state she’s in after twenty minutes of maths, in total silence with no noisy children, or other interruptions……..how in hell’s name is she supposed to go back to school? And more importantly at the moment, is the fact that because she is a year six, she will start a new school in September. How is that going to work? I have no idea, and to be quite honest………it scares the hell out of me. Ever since this whole thing first started, I’ve set myself imaginary goals. ‘It’ll be okay,’ I say to myself. ‘They’ll have the whole thing sorted out in a month or so.’ That was the middle of October. It soon became clear (to me at least) that this whole thing was going to be a lot more difficult and prolonged then anyone could predict. The main reason I resigned from my job as a Teaching Assistant, was the fact that I could see this running on, and on and on. So that was back then, way before Christmas, and ever since, all of these goals have come and gone. The last one was set sometime in late February I think. It was to have her back at school, at least part time, directly after Easter. But now that’s come and gone, and although she doesn’t start her new school until September, you’d be surprised at how quickly, in my life, that’s zooming towards us.
Anyhow, back to the appointment.

My Children Trying Hard To Stay Dry At Hengistbury Head

My Children Trying Hard To Stay Dry At Hengistbury Head

We were told to keep going with the Acetazolamide (one of the drugs used to supposedly help reduce the pressure), stop taking the aspirins that were prescribed last time, and continue reducing the steroids. All of this was about what we expected. The doctor then stated that my daughter should start going back to school part time, despite the fact that she still has this ongoing headache. Now I mentioned everything I’ve written above…..how much she struggles just to do a tiny bit of work, and that’s not in a noisy, crowded, school environment. But she was adamant. She said seeing a psychologist would perhaps help her do this, and that perhaps we as a family would benefit from seeing one. Oh good! At that point, it seemed that any hope I had that her headache would be cured by the time September comes round, had just been forcibly crushed. It sounded, and still sounds to me, like she’s just expected to go forward with her life, putting up with this constant headache. Just when I thought it couldn’t get any worse……….it did! The doctor started talking about migraines again. If you’ve read my other posts….you’ll know I’m not too thrilled about this. When my daughter had a low pressure headache from a ‘lumbar puncture’ that went wrong, instead of ordering an MRI scan of her spin, the doctors spent three weeks trying to tell us it was a ‘MIGRAINE’. One in particular got most disappointed with me, when I refused to consent to my daughter having the migraine medicine. I refused because I knew full well her condition was due to a CSF leak in her spine (something Salisbury hospital knew, and had told them), and the more I hear the word ‘migraine’ the more I hear the word ‘GUESS!’ Now you might think that it’s my bad experience at the end of last year/start of this year that makes me so mad when the go on about migraines, and perhaps, yes…part of it is. But you see, they know her condition is as previously mentioned, Idiopathic Intracranial Hypertension (IIH). That’s what she’s been diagnosed with, and both hospitals have told us that’s what she has. The condition is rare in adults, even more so in children. So here’s the bit I can’t understand. You know that she has IIH. That is a fact. It is unbelievably rare. Another fact. Why do you then start going on about migraines? Are you really telling me she has this really rare condition that affects the pressure around her brain, and that that’s not what’s causing her the headache, but instead she has a migraine on top of the really rare condition. I’m really sorry, but the migraine thing here is nothing more than a guess…..or worse. A cop out. Oh…..let me see. I don’t know what it is, so I’ll say………….MIGRAINE! It seems that my daughter’s symptoms aren’t following the ‘usual’ pattern for IIH, but then they IIH is so rare there isn’t much ‘usual’ about it at all – and a constant headache isn’t typical of migraine either! I refuse to believe she has this rare condition and then has a migraine on top of it (something that conveniently can’t be proved). Surely you’re just asking for trouble in thinking about prescribing medicine for something that you don’t know is there, while you’re still trying to figure out how to deal with (hopefully cure) a rare underlying condition that you know is there. At this point I want to say it’s not rocket science, or brain surgery (but it almost is brain surgery). To my mind there is no logic or common sense in what is said. I know that I have no medical training, but in some of the things that have gone on with my daughter…….I’ve been able to predict, thanks in part to the wonderful doctors at Salisbury who give you an insight into what has gone on, and why. And yet still, on occasion, you get treated almost like a child (particularly if you don’t accept word for word what they say). Needless to say, I wasn’t happy about the subject of migraines and related medicines. Interestingly the subject was changed quite quickly. If I had to say why, I would guess it’s that look that I get when I’m disappointed. I’m pretty sure my wife knows the one. I’m assuming the doctor had a fair idea, given that I didn’t have to say a single word.
Friday was not a good day. A psychologist to look forward to. I think we can safely say…..he or she is going to ‘love’ me. I’ll either be locked up in a padded cell somewhere, or be providing information on how to be a deeply disturbed, grumpy old man for many years to come.
I’m sure the subject of migraines will be revisited another time….there’s something to look forward to. (Oh, and when we left, we were told to take the form to the reception desk, and ask for the next available appointment. When do you think that was? That’s right ………..FEBRUARY!!!! You really can’t make it up.)
And now all we have to do is get my daughter back to school…..headache and all.
It’s funny…these past few weeks, I’ve just been grateful she’s as well as she is. When I say that, I mean that she can walk about (I know this sounds stupid, but she did spend ten weeks of not being able to walk, and barely being able to sit up). Recently we’ve had a couple of trips down to the stunningly beautiful Hengistbury head, or even on occasion to the beach. I suppose both times we’ve spent about an hour sitting on the nearest beach, the kids throwing stones, and running in and out of the waves. It’s been the only times we’ve been out anywhere nice as a family, since September, before this all started. I’m grateful for that, but want so much more. I want it to be like it was before. I want her to be well. I want her to be able to ride her bike, swim………..play hockey. I know it’s selfish…..but I want all of that, and it tears me up that I can’t have it. Perhaps one day.
So if any of you out there on the dastardly interweb have any experience with Idiopathic Intracranial Hypertension (IIH), know anyone with it, or who’s gone through it, if you’re a neurologist with an interest in it, and you have any advice on anything we can do, however unusual or unlikely………please get in touch. I’m stuck and don’t know what to do. So if you can please help, I would be ever so grateful.

Extended Nightmare

Saturday 22nd February 2014

The last couple of days have been a whirlwind.  If you’re reading this then you’ll probably know my eldest daughter has been ill for a very long time, nearly five months now.  It all started at the beginning of October, and if you want to know every last detail then read the post under the life category in the tag cloud entitled ‘The Worst Day Of My Life’. To cut a long story short, in a matter of only a few minutes my daughter went from fully fit…..to seriously unwell. I rushed her to Accident and Emergency, where she deteriorated, to the point where she couldn’t speak properly, follow simple instructions, or understand what was going on. She was rushed for a CT scan of her brain, where they found nothing out of the ordinary. She was kept in hospital for a day or so, and then sent home. Ever since then (nearly five months) she’s had a headache that just won’t go away. Salisbury_District_Hospital_758696_i0Through a series of lumbar punctures (five in total), and by constantly looking at the back of her eyes, they’ve found the pressure around her brain to be too high, a condition called idiopathic intracranial hypertension…..that’s what the fantastic doctors at Salisbury think anyway.

What I should add at this point is that the last lumbar puncture (16th December) went terribly wrong, and ended up with her having a low pressure headache for over seven weeks, culminating in two blood patches under the care of the wonderful anaesthetists at Southampton hospital. That was some three weeks or so four weeks or so ago, and since then she ended up back in the ward in Southampton, due to some complications. Two and a half weeks ago she was discharged, still with a headache, but looking like the CSF leak had been finally fixed. Before leaving I expressed my concern about the underlying condition returning (i.e. the high pressure headaches) but the doctors seemed unconcerned about that happening. On Thursday of this week, we attended a routine eye appointment up at Salisbury, a follow up from some time ago. I fully expected them to find nothing wrong, no high pressure at all, particularly given that just over two weeks ago when we were discharged, they checked her eyes and they were fine. Imagine my astonishment when the very polite eye doctor announced that there was indeed pressure there, papilloedema I believe it is called. At this point alarm bells were ringing in my head. I can remember thinking, “Oh my God…the pressure’s gone from normal/low two weeks ago, to very high now.” Flashing through my mind were visions of that first incident, the one where she couldn’t speak properly or understand anything. Trying to remain calm, I pointed all this out to the eye doctor, who got in touch with the paediatricians straight away. They in turn got in touch with the neurologists at Southampton. After much discussion, late on Thursday afternoon, the neurologist decided that Jaina needed to go to Southampton hospital the following day (yesterday) at first they said for another lumbar puncture and then changed their minds to an eye examination. I couldn’t understand why we needed to go there for an eye examination, seeing as that’s what she’d just had at Salisbury, but we travelled down, went through all the examinations, and waiting about. Now I have to say, the eye clinic were fabulous, from the wonderful women in charge of the reception who sorted out all the details of our unscheduled arrival, through to the eye nurses and doctors. After all that, they found the same as the day before….that there was papilloedema (swelling behind her eyes). Late on Friday afternoon, we met up with the neurologist again, where she prescribed a two week course of steroids, that because of how late it was (all the pharmacies were closed) wouldn’t start until Monday at the earliest. So off we toddled home. Given all the driving, sitting around, etc, etc, Jaina had held up particularly well, given that she was still recovering from the eight weeks or so of barely being able to walk, or even sit up without vomiting. I was quietly pleased with how she was doing, and just a tiny glimmer of hope, (something I’ve had on a few occasions during all of this, all of course, violently crushed, up until now) nibbled away at me deep down.

So onto this morning. The family got up, Jaina looked pretty good for someone who’s got a headache that’s lasted nearly five months. She wasn’t well enough to go out…….as a family, we haven’t been out anywhere since early November. Deeply disappointing. Normally we’d be going for walks or cycle rides, but not so. I miss the sea. Anyway, we all got on with our jobs around the house, me busy working on the computer, with the release of my second book, exactly a week away, there was plenty for me to do. Anyhow, a short time after lunch……….it started! Pretty innocuous at first. Her head was feeling worse and she had to lie down. This happens quite a lot, so you don’t think too much of it. Then she complained that the light was hurting her eyes. Now it was time for alarm bells. So I stayed with her, while my wife tried to get hold of the neurology team in Southampton. Predictably, she then started to feel sick………everything we’ve seen before, all leading to an emergency visit to the hospital. Having no luck getting anyone at Southampton, and with Jaina going downhill rapidly, my wife phoned the children’s ward at Salisbury and spoke to one of the doctors there. They pretty much all know Jaina….not something you want your daughter renowned for, I can assure you. We were told if she was that bad, that we could bring her up. Team Cude kicked into action, assembling bags that had been on standby, just for this purpose, getting a coat and shoes on Jaina, and scrambling her into the car. It wasn’t a great drive (pretty much through Salisbury city centre on a Saturday afternoon) but it could have been a lot worse. We parked at the hospital, and on the walk to the main entrance she vomited badly. I managed to get her up to the ward, almost carrying her at times. The nurses were great, found her a bed and a room straight away, carrying out their jobs effortlessly, despite our unexpected arrival. One of the doctors appeared quite quickly, just after the first set of observations had been done. I explained Jaina’s back story, and what had happened over the past few days, added that what was happening now, was precisely what I’d been trying to avoid, by seeing the neurologists and going to Southampton yesterday. The doctor was very good and checked Jaina over good and proper.

Now I had explained that very first incident, the one where Jaina couldn’t speak or follow very basic instructions to the doctor, nearly five months ago. As the doctor was talking to me, letting me know what was going to happen next, as well as vomiting, Jaina started to get……….well, let’s say CONFUSED…. as that’s what the hospital called it. If I thought the alarm bells had rung inside my head before, it was nothing to what they were doing now. The doctor was about to leave and speak to her colleagues. Before she left I managed to speak to her out in the hall, all the time watching my daughter through the open door to the room she was in. I pointed out the confusion, and told the doctor this was starting to be more and more like that first incident. The staff, doctors and nurses were great; I couldn’t have asked for more and knew that she was getting the best care she could at the moment. Just then, the doctor who’s been in charge of Jaina at Salisbury, the one doctor I trust with my daughter more than any other, arrived. I don’t think I’ve ever been so relieved to see anyone in my entire life. He did a brief examination, but having seen Jaina many times before, he could see the state that she was in. Optima_CT660_2_03_4d4b48ed74So quite quickly we were on the move again, echos of that first fateful incident resounded through my mind as we headed (my daughter tucked up in the bed, me on foot with the porter and nurse) once again, to the CT scanner. As we moved Jaina from the bed to the scanner, it broke my heart. It was all I could do not to cry. And the wait outside, again brought back the painful memories of that very first time, as I stared miserably at the very same pictures on the wall. By the time we got back to the ward, the doctors had received the results of the scan, and there was nothing out of the ordinary. But Jaina herself was getting worse. She didn’t know where she was, couldn’t tell anyone her date of birth….again, it was heartbreaking.

So after more consultation with the neurologists at Southampton, she’s been put on a course of intravenous steroids for three days, the first of which she’s had this evening.

So here’s me, lying in a fold down bed next to her, watching as she sleeps, monitoring her every breath, hoping it gives her some respite from that constant headache, hoping that the steroids will bring the pressure around her brain down to a safe level. It’s now 11.30pm, and the last time she had her observations done (every two hours at the moment) about 10.15pm, she was still confused, and couldn’t tell me her date of birth.

This extended nightmare is like nothing I can ever imagine. The pressure, the strain, the worry, the lack of sleep……….but most of all the feeling of helplessness. I’m her dad….I should be able to make it better for God’s sake. That’s my job. But I can’t, and it’s eating away at me steadily. Writing all of this helps, but there’s so much to this saga, a lot of which I just can’t write down at the moment, if ever.

Oh well, I’d better put the pen and paper down now and see if I can grab a few hours of sleep. I think it’s going to be a long few days.

Caged Hell

I step in. The water hits my head, wiping away the last vestiges of sleep. Damn it’s cold! But it takes my mind off of the pain in my back from sleeping in that bed, and all the other things on my mind. It’s Thursday 16th January, 7.20am, and as the cold water assaults the rest of my body I reflect on one, if not the, hardest weeks of my life.

We arrived on Sunday evening. My eldest daughter and I bade farewell to my wife and youngest, taking up residence in the ward. On Monday, my daughter was taken for an MRI scan of her spine and brain. The porters and the MRI staff were wonderful, laughing and joking, each managing to coax a smile from my very poorly little girl, who was as ever an absolute star, particularly in light of the fact that she was in the imaging chamber for an hour and a quarter. That’s a long time to keep still, and I should know, I was sitting at the end of the chamber, constantly fidgeting about on a chair.

With that done, we were taken back to the ward, for more……..WAITING! It’s this that drives you nuts, this and the lack of communication. It chips away at your sanity, makes you more tired than you should be, makes you doubt if anything at all is being done. You’re sure it is, but it doesn’t seem like that at the time. Thank heavens for the nurses. I’ve said it here many times before………but they are just simply wonderful……with nothing being too much trouble for my daughter. Without those wonderful nurses, being here would, I’m sure, be utterly unbearable. The ward we are on has six beds in it, and for the most part has been totally full up, especially at night. This makes it interesting, to say the least. With adults sleeping on fold down beds alongside babies and children, there are only millimetres and a flimsy curtain separating one family from the next. I’m not sure ‘cosy’ would be the description that comes to mind.

But that’s nothing compared to how uncomfortable I find the beds. It didn’t help that on Sunday afternoon, right before setting out, I found myself playing hockey for the first time in ages, and that was after spending all morning with my younger daughter, watching and encouraging her at a hockey tournament. With the chance to play being something I couldn’t resist, I did very briefly worry about what would happen should I get injured, with regard to going into hospital with my daughter. What didn’t cross my mind however, was how wracked with pain my body would be the following morning, having played hockey and then slept on that uncomfortable bed. ‘Rough’ doesn’t begin to cover it.

Moving on. The doctors came round on Tuesday. It was all very professional, as you’d expect. I got to meet a different consultant, who was very nice. I was quite pleased. We were told that Jaina’s procedure had been moved up to the following day….Wednesday (despite the fact that it had been scheduled for Thursday). Good news… a day less waiting, at least that’s how I looked at it. Then, thanks to my badgering, the topic turned to my daughter’s underlying condition. The word migraine was mentioned a lot. This was something that happened last time we were here, after being sent here specifically for a blood patch, something that was ruled out immediately, despite our own hospital telling them that’s what she needed, and despite no examination of my daughter at all…..not great, considering that’s why we’re here now. Anyhow……migraines. Much questioning, much consideration and much more talk about how that’s what was playing a big part in what’s going on with my daughter. Hmmmmm. I’d already been told on the phone that a new consultant would be looking after us this week, and my wife had checked her out on Google. Impressive stuff, and an expert on headaches……fantastic! But once again there seems to be a willingness to dismiss everything that’s gone on before, and when I say this, I mean all of the eye examinations that she’s had at Salisbury hospital, all of which to my understanding revealed that the pressure around her brain is/was too high. That we were told is what is causing her headache. But here and now, all the talk centres around migraines. “Have you checked all of the information about her eyes that was sent over from Salisbury?” I asked, pretty sure that it had been done as not only had the wonderful Southampton eye doctor said she was going to request it, but the best doctor in the world, the one my daughter (and I) trust implicitly, from Salisbury, assured me weeks ago that he was going to send it over. So I’m pretty sure it’s there. “Uhhh not yet,” was the answer. Now I didn’t say this, well you wouldn’t would you. But what I thought was….. ‘You know what’s been going on, there’s an easy way to see if the pressure around her brain is too high, surely before coming to see me for the first time, and deciding that migraines were playing a big part in all of this, you would have reviewed all the information available, especially the reports from Salisbury about her eyes.’ But no. Anyhow, once again I explained all of this, once again the whole pressure thing, that we’ve been assured was/is there, otherwise why on earth has she had five lumbar punctures was dismissed, in favour of migraines. Now, I’m not saying that migraines aren’t playing a part… but from a very logical point of view (and that’s how I think, given that I was a service engineer for nearly 20 years, and you have to think that way) surely you would deal with the problem that you know is there. And they know that right from the start of all of this, the pressure behind her eyes, and therefore around her brain has been getting too high, and in fact may never have been as low as it would be in a normal child during all of this time. That in itself would cause my daughter to have a headache all the time, something she has had for well over three months. There is no physical evidence that a migraine is playing any part in all of this, and yet still they persist. Surely it would be better to concentrate on getting the pressure around her brain, back to a normal level, see if the headache goes away (which I think it will), rather than to suggest that, either that’s not playing a part, or it is playing a part, but  a rather minor one, one in which migraines are causing all the problems. One minute they say that a migraine which is constant, constant for over 3 months is incredibly rare, the next second they say that is what she has, on top of the raised pressure around her brain. There’s no logical explanation as to why this is. I find it hard to accept that on top of the raised pressure around her brain, she also has another rare condition, one that there’s no proof of, and on that it’s impossible to prove definitively. So when the great doctor starts talking about my daughter taking migraine medicine that takes over eight weeks to have an effect, and has a number of side effects, I confess to losing interest, instead focusing all my efforts into controlling my temper.

Anyhow, the visit is soon over, with nothing being decided until after the ‘blood patch’. Wednesday arrives……..another early cold shower, another day. My daughter has some toast at 7am, after that it’s only water until 11am, and then nothing. The list she’s on starts at 1.30pm we’re told. Things are looking good. Until, that is, one of the neurology registrars arrives at about 12.45. The curtains around my daughter’s bed are pulled round. The registrar starts to talk. Clearly it’s not going to happen today. I knew we were on an emergency list, and both my daughter and I would much rather someone who’s been in a car crash or the like is treated and we have to wait a bit longer. We say as much. But you see………there’s a twist. She says that the list has been cancelled because of an emergency, but then tells me that she’s trying to get us on a list for Friday. “Friday?” a stutter. “Oh yes,” she says. “I’m doing my best, and I’ve got most things in place, the theatre time, etc. Just waiting on finding the right person to do it.” So you see, it had gone from Thursday, to Wednesday to possibly Friday, but more like next week. Given that we’d had to come in on Sunday, for an MRI on Monday and stay over all that time, when originally we were told we could have an MRI at Salisbury and just come and have the procedure as a day patient – things had changed about a dozen times at the end of last week, each getting worse from our point of view, each more exasperating than the last. But this was it. This was enough. I was done……..well and truly. I didn’t snap, I wasn’t rude, I apologised to her, because she seemed very nice, and I knew that it wasn’t her fault, and that no doubt the people making the decisions were hiding away in their offices somewhere, but I launched into it. I told her how badly we’d been treated, how I’d been lied to on more than one occasion, how all of this, even taking Christmas and New Year out of the equation, should have been done weeks ago. I told her how unwell my daughter was, how she could barely walk, and hadn’t been able to for nearly a month now, how just sitting up for a few minutes was a strain. By now, I was in full flow, the passion for my daughter powering my words, my temper bubbling away somewhere underneath, always polite, always courteous, giving it everything I had. The words then, a bit like my writing sometimes, just came out. I’m assuming that was because it was all about my daughter, and it had been bottled up for some time, and I’d just got to the point where I’d had enough. As the words came spilling out, I was aware of only three things, the registrar, the wonderful nurse who was in there with us, arms folded, looking on….approvingly, and the fact that although I wasn’t shouting, far from it, I was pretty sure that every person in that ward, and most in and around the corridor and reception area just outside the door we were adjacent to, could hear what I was saying. It’s hard to say how long it went on for. It seemed like an age. If I had to guess, I’d say ten minutes, but in reality……..who knows? Once I was done, the registrar scampered off, desperate to get away. The lovely nurse and I shared a look. The curtains around the bed were pulled back. The rest of the ward looked on. Immediately I phoned my wife, instructing her what to do. After that, I returned to my seat, next to my daughter’s bed in the ward, looking like the angriest man in the world no doubt, something my wife could attest to on occasion. Anyone in their right mind would and should have stayed well clear of me…….but interestingly, not the nurses. Despite the seething anger rolling off me, they constantly asked if there was anything they could get me, anything they could do. Their kindness was a bright light in a dark sleepless week. It meant a lot, especially considering that could have just left me alone. So we waited. I’d told the registrar to send someone in authority to see me. I was biding my time, scheming and planning, the cogs in my tiny brain whirring out of control. A long time passed. Still I was angry, and deeply………. ‘disappointed’ off! (See what I did there?)

But I suppose about 3.30 a man in a theatre gown wandered in, and started looking at some notes. Nothing unusual in that, it happened all the time – most of the kids/babies were going in and out of theatres at one time or another. He disappeared, only to reappear five or so minutes later with a neuro registrar, a different one from earlier. We were introduced and informed that the very nice man (Paddy I think his name was), was going to be doing the ‘blood patch’ this afternoon. Anger turned to wonder and astonishment. Straight away he started checking out my daughter’s back, planning what he was going to do. The registrar disappeared. It was all happening at breakneck speed. The relief and joy must have been rolling off me, as much as it was showing up on my daughter’s face. “Oh dad,” she said, “I’m so glad just to be having it done”. So was I. So an hour or so later, we went down to the theatre, the porters again were wonderful. The theatre staff were great, putting my daughter at ease. I wasn’t allowed in (the first time), but it didn’t matter, I’d met the team that were doing it, and much like the Salisbury doctor I talked about earlier, they inspired confidence and oozed assurance. These were most definitely people you could trust with your child’s life.

So it was done. We returned to the ward. The nurses were pleased it was done. My daughter had 24 hours lying flat on her back to look forward to. Later that evening, the registrar that got the full force of my words appeared on the ward to do something else. She had to walk past my daughter’s bed as it was right by the door. She told me how glad she was that it had been done. I told her how odd I thought it was that it had been done, after I’d had my ‘little’ say. She exclaimed that it had been pure luck, and a space had opened up. Hmmmmmm I wonder if that is what happened? I guess I’ll never know. But I often wonder if making a fuss gets you further. I’m not usually one to do that, far from it in fact. But you see people do it in all kinds of places….shops, restaurants, hospitals….and most of the time is seems to work. I can’t help thinking that I should have kicked up more of a fuss when we were here before Christmas; maybe it would have got the ‘blood patch’ done then. It eats away at me. It shouldn’t be like that. You shouldn’t have to kick up a fuss just for people to do what they’re supposed to do. It’s not a thought I like, but I store it away. I remember it……….for the future. If that’s the way to go, then maybe I’ll have to use it again…..I hope not, I truly do. But my daughter’s wellbeing is more important than anything else in the world……….ANYTHING!

That was yesterday…….it was a nightmare, with the operation, the nursing and theatre staff the only bright points. My body seems used to the cold water by now. The pain in my back eased, ever so slightly. I wonder what today is going to bring, if it will all prove successful. I long for my bed, to curl up and sleep comfortably, if only for a few hours. Getting dried, I wonder what surprises this new day holds in store. Hopefully none, hopefully my daughter is on the mend. I trudge down the corridor, back to the ward, doubt my constant companion.

Not Getting Any Better

2.40am Christmas Eve

I’m borked……..at least, that’s what Han Solo, one of my favourite fictional characters would say. Ahhh…..fictional characters. They seem a world away at the moment as I write this in the barely perceptible light of the neurological ward I’m in. The last nine days have seemed like nine years. I’ve had a couple of days at home, having swapped with my wonderful wife, but mainly I’ve been with my eldest daughter…..in hospital. And I’m currently here, Southampton General Hospital, in the children’s neuro ward. I find myself both shattered and inspired. Shattered through lack of sleep and worry, and awe inspired by the people who work here, and some of the patients. My daughter is the eldest on the ward by a very long way, with the others being toddlers and a particularly gorgeous baby (born after 25 weeks) all of whom are, as you can imagine, very ill indeed.

As I sit here on the fold down bed, trying hard to ignore the recurring pain in my back, the soft whimpers of the tiny children all around me break my heart. Some seem to have been through so much already in their short lives and, on Christmas Eve of all days, it seems impossible for me to fully comprehend.

Early yesterday (around 5.30am I think), the tiny baby I mentioned earlier started crying desperately. I lay awake listening with amazement given that he’s the smallest baby I’ve ever seen, and that he’s so ill. Listening intently, I was stunned to hear  in his urgent cries………actual words! Now it is plausible at this point to think that I might be mad, I’m not entirely sure myself that I’m not, but I give you my word that what I heard him say was, “Help me,” over and over again, hidden amongst his guttural cries. Strange but spookily true.

It’s the waiting that taunts me the most. I like to think that I have a reasonable amount of patience……but my God, talk about mind numbingly boring. Made worse of course by the fact that I so desperately want answers as to why my daughter is so ill, and what’s going to be done to make her better. Yesterday, (after waiting since last week) we got to see the eye doctors here. Of course that wasn’t without its adventure. Having taken her in a wheelchair to the eye clinic (I did the same last Wednesday at Salisbury…….where after 20 minutes of sitting up, she puked big style) I brought with me a couple of the cardboard bowls this time……..just in case, all the time getting weird and wonderful looks for carrying them around with me. This time, she managed to last an hour and a half (until about halfway through the appointment,) pretty damn good considering she has barely been able to prop herself up in bed for the past nine days, before once again…..puking! Not looking so stupid with the cardboard sick collectors now!

After all the usual tests that she seems to have had a million times in the last few months, and a couple of unusual ones (ultrasound on the eyelids……..never heard of that before) the very wonderful eye doctor explained that she thought there was indeed still pressure around the back of my daughter’s eyes, something that has been apparent from almost the start of all of this, and the reason she’s had five lumbar punctures so far. This lovely lady deserves a mention (along with all the other nurses and doctors here) because of how kind and considerate she was during my daughter’s and my, time of need. So………..THANK YOU! All of you.

Now, we were supposed to have been able to go home yesterday (given the storms…….probably not a bad thing that we didn’t), but because of all the sickness, it wasn’t possible. My daughter of course was devastated. I of course had to put on a brave face……….AGAIN! Not happy. We are supposed to be going home today….but who knows? Everything is so confusing. There are mentions of migraines, blood patches, more visits to have her eyes checked out………..it’s so frustrating! All I really know now is that my patience is most definitely running out. My daughter has been so ill since her 5th lumbar puncture (8 days ago). Even now she struggles to sit upright for more than a few minutes at a time. Everything is clearly not right. But what can you do? Nothing but place your faith in the wonderful people that work here, and give them the time and space they need to work their magic. So there, that’s it. That’s the plan, however hard for me it might be.

Anyhow, I’d just like to finish my rant by once again thanking all of the staff that have looked after my daughter Jaina. I have the greatest respect for them all, for the hours they work, their attitude, how kind and caring they are, and above all their professionalism. I know that they do something I never could, something that puts me even more in awe of all of them.

11.am January 11th

Having just typed up everything that I wrote in the middle of the night on Christmas Eve (above), my thoughts turn back to the nightmare I seem to be stuck in the middle of. Yes….that’s right, everything is still ongoing. We were sent home on Christmas Eve (an interesting experience, driving through the storm debris with a child who had constant headache, had trouble sitting up, who was almost certain to puke at some point. Credit to her, she did manage to last all the way to our front door) much to our relief. Although saying that, I have been told subsequently that if it were any other time of year, we most certainly wouldn’t have been discharged. Not sure exactly how that makes me feel.

Anyhow, my daughter is roughly still the same….no more puking, but struggles to stay on her feet for any amount of time, still has a constant headache which never actually goes away, but is made less painful by lying down. Now, we’ve had a trip back to Southampton to see the eye doctors once again, who of course were fantastic. Oddly though this time….very little in the way of pressure behind her eyes. My wife and I were surprised, given that every other time, we’ve always been told there’s lots of pressure there. After a long afternoon there, and having to lie my daughter flat in the front seat of the car to get her home, not something I was very happy to do, we’ve now been told that she needs something called a ‘blood patch’, the very reason we were sent to Southampton on the 20th December. This was all decided 8 days ago, and since then, there has been much changing on exactly when it will happen, etc. If the latest plan does indeed take place, and given that it’s changed at least half a dozen times so far, so you can see why I have my doubts, then my daughter and I will go to Southampton tomorrow evening, for her to have an MRI on her back on Monday, and then have the ‘blood patch’ done on Thursday afternoon. So basically, the best part of a week in hospital. I can’t say I’m looking forward to it. I get very little in the way of sleep (even less than when I’m at home……and that’s saying something), and the time does drag on. I suppose there will be more waffling for me to type up when I get home………..be sure to look forward to all of that, won’t you. But as always, I think you have to take the positives out of it. I hope, (and I did ask this), that the consultant, who has never seen her before will poke her about and generally dig into her underlying condition (the high pressure headaches………that have been going on for over 3 months now) while she is in there. If that’s the case…….then FANTASTIC!, because this has what has been puzzling everybody from day one. If they can make some headway into that, then the hospital stay will be a small price to pay. That’s not to say I’m not worried about the ‘blood patch’ being done, but I have faith in the doctors, nurses, and other staff there, to look after my daughter.

So there you have it. My Christmas and New Year all rolled into one. I’ve only been outside on a couple of occasions (to do the weekly shop, and to ferry my youngest to school once) in a matter of weeks. That in itself deeply disappoints me. As a family, we usually go out all the time, in all weathers…walking, cycling, swimming, etc. I miss all of that, and in particular seeing the sea. Hopefully, for my daughter’s sake, it won’t be too long before we can do all of that again, with all of us fit and healthy.

Late Night/Early Morning Ramblings Of A Mad Man

Monday 16th December

****, ****ER, *****CKS!!!!!! (Sorry for the expletives)

Another late night excursion to the hospital and here I am again, 5:52am, in exactly the same bed as last time. God my back hurts. But more pressing than that, is the fact that the time between these visits has decreased rather suddenly. For about ten days now I’ve been plagued by thoughts of my daughter being in hospital over Christmas. She’s missed out on so much already…. choir concerts, school plays, almost certainly the school Christmas meal, her class party, not to mention having to give up swimming lessons and not having played hockey for over eleven weeks. But Christmas in hospital……. PLEASE NO!

The last time this happened, just over eight days ago, I can remember trying to work out all the timings. Of course you can never be certain, but I figured if she needed another lumbar puncture, I could try and persuade the good doctors to do it around the end of this week (about the 20th) and at least that way she would be at home and recovered from the low pressure headache for Christmas. But late last night it started all over again… leading to us being here now. And while I don’t know for sure what today holds, I would think there’s a pretty good chance that today she will have to have her fifth lumbar puncture in some eight weeks or so. With that in mind, and if things stay the same, that would put the next one on either Christmas Eve, or Christmas Day…. DAMN!!!

In the few hours of sleep I’ve managed to grab here overnight, all I’ve dreamt about is her being here on Christmas Eve, and into Christmas Day. Of how to get her presents to here without her knowing, and how to make it a great Christmas for her. God knows she deserves that with all that she’s been through. Things just seem to be going from bad to worse.

Last night, in between us arriving and the doctor taking a look at her, she lay in the hospital bed, looking so poorly. It took everything I had not to cry. I know parents across the world go through more than this, with children much worse off than Jaina, every day, but how do they do it? At the moment it takes everything I have to cope. Every last ounce of my energy and mental strength, and even then, it feels like I’m swimming against the tide, about to give in to the incredibly strong current. Sometimes I swear my head’s spinning so fast, if feels like it’s going to come off.

Anyway, she’s just woken up as I’ve been lying here writing this. Off to find her some breakfast (I think she’s going to need all the strength she can get) and see what the day holds.

Much Later On In The Day

SURPRISE! Another lumbar puncture. And of the four I’ve been there for, this was by far the worst. I know I’ve said it before, but she’s so brave. I could see how much she was struggling, but she had no choice but to hold on, suck in the entinox and bear it. I hated every second of watching that, all the time trying to smile and give her the thumbs up. It felt like I aged a year in the course of those forty minutes.

We’re back on the shared ward now, and I’m desperately hoping to go home. As I sit here watching her still struggle, complaining of the pain in her head, back and legs, it almost becomes too much. After my earlier writing, we were treated to incredibly loud television noise all morning and most of the afternoon by the two other occupants of the ward, even when they weren’t watching it. I find it incomprehensible that people would do that when sharing an enclosed space with others, particularly really sick children. Just as they left, one of the other beds was occupied by a sick child, accompanied by her mother. Now to be honest, at that point, I’d had quite enough. We were still waiting for the lumbar puncture, my daughter was feeling really ill, with an incredibly bad head, I’d had a few hours sleep, and had to put up with the really loud television for many hours. What happened next almost defied belief. With the child settled into the bed opposite ours, her mother started to make a series of phone calls letting friends and relatives know what was going on. What’s wrong with that I hear you say? Normally, nothing I would answer. But given that they were a mere 15 feet from us, and that the mother was ‘shouting’ every word down her phone, quite a lot I would say. It was all I could do to hold my temper. She had to know how loud she was. And it wasn’t like she didn’t know we were there, you couldn’t fail to notice. Of course I could have said something, but I didn’t trust myself, or rather my temper. It would have taken next to nothing for me to let rip, and with my daughter going through so much, I decided to try and bite my lip and stick things out. But I have to say, it really ****** me off that some people have such an appalling lack of manners and regard for anyone other than themselves. In almost any other situation I would have spoken up, or at least I’d like to think so. So what started as a bad day, got worse with all the noise, shouting, and finally another lumbar puncture. I’m not sure whether to look forward to Christmas or not. I guess I won’t have long to wait to find out.

Saturday Morning Blues

Ahh…….2.45am, I remember you. The last time was only a few weeks ago, here in exactly the same place……..the hospital! It seems ironic that some twelve hours ago (Friday afternoon), I was so tired, I kept dropping off in front of my computer, and yet as I sit here now, I’m unable to go to sleep, on what has become now, a familiar fold down bed.

My daughter’s headache (which she constantly has), spent the day going from bad to worse, culminating in a late night, 11pm trip to the hospital. As usual the staff were great and got her settled in a bed straight away. But just like my daughter’s headache, things were kicking off here as well. After the first set of observations, a doctor appeared, sat down on the end of her bed, and enquired about exactly what had been going on for us to arrive there at such a late hour. At that exact moment, the doctor’s hospital pager went off. Trouble in the maternity ward…….she had to go straight away, and was very apologetic. I told her we understood, and off she zoomed. Given that my daughter was in more than a fair amount of pain right there, it would only be reasonable for her to be more than a little fed up. But given the fact that she’s the most kind, considerate and caring person I’ve ever met, I shouldn’t have been surprised by her response…..”I’d much rather they go and look after the little babies” she said. It was all I could do not to cry, and the second time in only a matter of hours. Earlier, before our late night excursion, my wife came downstairs from putting her to bed (little did we know it would only be for a matter of minutes), very much as normal. My wife told me that Jaina, my daughter, had been a little upset about her Christmas letter to Santa. She’d remembered something else to ask Santa for, something important. I enquired what exactly could be so important, only to be told she wanted to ask Santa to make it possible for her to be well enough to go back to school. Again, almost tears for me. At this point, the only thing on my Christmas list for Santa was to get her fit and healthy, well enough to go back to school and see all the friends she misses so much.

A short while later, back at the hospital, another doctor arrived to check out her condition. He sat down on the end of the bed, and you’ll think I’m making the next bit up…..but I swear I’m not. I’m sure you can guess what happened next. That’s right……..his pager went off, and another mad dash to the maternity ward ensued. Despite my concern for my daughter, who didn’t seem to be getting any worse at least, I’d much rather the doctors prioritized a newborn baby over my daughter. Wouldn’t everybody feel that way? A few seconds after the doctor sprinted off, my daughter, despite her discomfort expressed the exact same thoughts she had earlier. It made me so proud that she would think to put a little baby before herself.

The doctors, like buses arrived together, sometime later, battling it out as to who examined my daughter. It was almost comical. After a thorough examination, putting our minds somewhat at rest, it was agreed that they would review things in the morning, letting the painkillers she’d already had, hopefully take effect. This was about half an hour or so ago, and I’ve sat and watched as sleep has finally taken her, some 18 hours or so since she’d woken up. Watching the rise and fall of her delicate features, I hope desperately that sleep takes away the constant pain she finds herself in. The thought of just how unfair things seem bounces itself around the inside of my head. That and the fact that I’d do anything to make it better for her…………ANYTHING!

So here we go again……me in the middle of the night. DAMN! I wonder briefly if they’ll prescribe me something for how I feel. I shouldn’t think so. As my mind wonders, ever searching for a few hours sleep, the thought of them pop into my head. Are they down there, deep below me, even now? It makes me smile a little, on the inside, anyway, just at the thought of dragons taking over the lower levels of the hospital. There’s a book there somewhere…….I’m sure. With thoughts of dragons and the whispered voices of the doctors and nurses from the adjacent corridor keeping me company, I drop off, wondering what tomorrow will bring.


As I sit here typing this up, it is now Saturday night. We’ve been at the hospital all day today, my daughter struggling with her pain. Early evening, the doctors decided it was time for another lumber puncture that will be performed tonight, providing there are no emergencies on the ward. I’ve swapped with my wife, who’s now at the hospital, while I’m at home with my youngest daughter. I’m not sure who’s got the best deal out of this. I wanted to stay for the lumber puncture (I’ve been there for the other 3), but I know my wife wants to be with my daughter. As well, my wife knows how tired I am, and wants me to get some sleep. I’m so lucky to be married to such a marvellous women. So I find myself waiting for the phone call, desperate to find out what’s going on, but knowing that I can’t phone, because I might interrupt everything. Waiting……….I absolutely hate it.