Monday, 16 November 2009


I keep encouraging Shannon to write more because she's the one who spends most time at the hospital, keeping an eye on Maggie and getting the skinny on the developments. And it'd be nice to hear from her anyway. It can't always be me banging on about the Taliban, Rod Stewart and god knows what else.

(I have vowed, however, to come up with some tenuous link between the girls and The Fall for a future post.)

It's been a busy weekend. We had a surprise visit from my brother Lee and my niece Amy on Saturday morning. They woke us up and I answered the door in my pants, muttering something about how they should have called first. Which I shouldn't have done - it was great to see them and particularly great that they just turned up.

We had a nice morning at home with Alice then up to the hospital to see Maggie. However, because Amy is of school age and not a sibling, she wasn't allowed in to see her. Except that a nurse allowed her in for a quick peek.

Me, Lee, Tom and Amy then left Shannon to it while we popped in for a quick pint at my beloved Eaton which, unfortunately, was full of rugby idiots watching the rugby. (Honestly, these non-pub goers who think it's okay to clog up my pub whenever they want to watch some crappy sport on the telly. And I love how they manage to make one pint last nearly two hours.)

Maggie was back in Room 2 and was quite settled. When we rang the night before one of the nurses said she'd had to be given Calpol, which seemed a bit odd. The nurse we spoke to later though said that she'd thought this was unnecessary. It's like they just make it up as they go along.

Actually, that inconsistency of care and attention really winds me up. It's seems like every time we go up there we have to ask whether things that should have been done have been done. Such as stimulating her swallow reflex or pulling her limbs about a bit. Often, it has been done - or at least they say it has - but I hate that we feel as though we always have to ask. It's like the only way we could get this properly nailed is by having all the instructions (from the speech therapist and the physiotherapist) tattooed on to Maggie's forehead. And it's not just that we worry that she's getting the right attention - it also makes us feel a bit guilty that we're not up there 24 hours a day supervising it all.

That reminds me. Shannon's been ticking me off a little bit because I'm occasionally unnecessarily negative about the care Maggie receives. I don't know, maybe I am. Or maybe I'm not. I mean, how hard is it to ensure that during every feed - which was every hour and is now every two hours - a nurse sticks her little finger into Maggie's mouth and wiggles her tongue about a bit? The answer is that it's not hard at all. In fact, it should be really fucking easy. So how come it doesn't always get done?

Thinking about it - given that Maggie's obviously going to be in NICU for a while and given that this is pretty important stuff - why can't we have a couple of nurses sticking with Maggie all the time? One for the daytime, one for the night. Nurses that we know, trust and approve of. Surely that's not beyond the realms of possibility? I think I'll suggest it.

Saturday evening was spent in front of the telly watching the X-Factor. I'm really forcing myself to give a shit this year because I desperately want it to be an entertaining diversion. Part of the problem is that I'm not drinking enough - I have my one bottle of Broadside in the evening and that's it. Witnessing such an obvious parade of twats just isn't the same when you're sober. Worse though, it was Queen night this Saturday. Queen, for fuck's sake. It wouldn't have mattered how great the individual performances were - they all had only absolutely shit songs to choose from.

Click the pics to see big versions of Maggie, Alice, Lee and Amy.


  1. Don't get too ticked off at Shannon....but I do think that you have every right to get negative about the care Maggie is getting. It can't be that difficult to just get in a damn routine of giving her tongue a wiggle or arms and legs a shake. And for any dimwit nurse who can't do that, well maybe they shouldn't be in room 2. I say we get cousin Jen over there and shake things up a bit!

    See you in SIX days!!!!

    Xoxo Mary and Bob

  2. Hi Paul and Shannon,
    Just a quickie...again! I had the same feelings about care given to boys, particularly Tom's positioning as I was convinced that they weren't moving him consistently. I asked for a couple of extra columns to be put onto his cares/observations sheet to record that things were being done consistently at regular times. It's was impossible to get regular/consistent staffing but I felt that they were more likely to do the things required if they actually had to sign off on a piece of paper. Ridiculous, I know. Some Nurses are fab, others aren't, and it doesn't help that the system itself puts immense and unworkable pressure on them at times.
    Good luck!
    Much love

  3. "Some Nurses are fab, others aren't". Yep from all the tales I get from Juni this is the long and short of it. You get Nurses like Juni naturally caring and worrying for patients in her care and then a strong section of nurses who don't really give a shit. They think they are doing a Tescos job and most likely that's all they are good for. Try and stop the one or two who you think have some empathy and concentrate on them to watch out for Maggie.

    Can you setup a webcam or other remote device next to Maggie?


  4. you know paul...

    its about continuity of care. there should be a plan for maggie and the various elements that make up her care should be following that guide. that guide should be written as a collaborative document by her specialists and then followed to the letter. you are her parents should have a say in that process and should demand no less than perfection. we are talking about a human life here. she is not just a number, and you are not just worried parents. this is all of course, my own opinion, but i hope you see where i am coming from.

    i want nothing but the best for you, shannon, and of course alice and maggie. you deserve to be upset and in my opinion should demand no less than perfection.

    i hope that all makes sense.

    bob in texas