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.

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