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.