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.

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