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.

Your thoughts are much appreciated..........Thanks!