Wednesday, 2 February 2011

Tantrums and Tiaras...

Wednesday, 2nd Feb 2011

On Top of the world...

I arrive at the hospital at about 9.15 - quite early for me...  I'm a little grumpy as I  hardly slept last night - after finding it difficult to get back to sleep past 3am and then when I did, being woken at 6am every ten minutes by Eve asking "What time is it?"  "What time is it now?"  "What about now?".  I swear, at one point, I'm sure I heard her say "Hey Apple!".  Perhaps that's just my lack of sleep giving me weird hallucinations.

The staff carpark (where parents with parking permits have to park) is showing as 'Full'.  The swipe card lets me in anyway..  and yes, I struggle to find a space on level 1.  And level 2..  3, 4, and 5.  As I go round and round up the ramps, I'm having to dodge inconsiderately parked cars on the ramps...  where they've parked in the pedestrian walkways.  This carpark hasn't had a working lift for over 8 years according to one member of staff, yet they expect parents with kids in wheelchairs to use this one instead of the carpark at the front of the hospital which has a ramp into the building.

I reach the top of the carpark, level 5 & 6.  There are spaces..  but the ledge barrier goes up to my hip.  It's high enough to prevent me driving off the roof, but as I reverse the car up against the wall, then go to the boot to get my bag out, I open it and instinctively lean back to avoid the boot swinging up and hitting me in the jaw.  WHOAA!!!!!!!!!!!

I realise how far I'm leaning back OVER the barrier, turn around and I seriously must have turned green.  The photo above is the view from behind my car.  Scary.  Still, at least I'm close to an A&E department, and from that height, should I fall, I might resemble a small child and be accepted for treatment.


I arrive on ward just after the doctors have done their ward round.  Mr. Solanki has asked Joel's nurse to change his dressing and put on a new bandage.  According to Joel's chart, he's due his antibiotic via the syringe driver at 2pm.  Nothing to worry about.

I make a drink for me and Louise, then she starts tucking into the lemon meringue cookies I bought yesterday.  She has a look on her face - sort of Gillian McKeith vs. Kim Woodburn.  "These are horrible..  they're not suppose to taste like this are they?".  I ask her what's wrong with them and she say's they taste stale - but soggy rather than 'crispy' stale..  She looks at the best before date...  Today.

"They should be ok, they're in date..  you always tell me stuff is ok even the day after!" (she tells me this repeatedly, knowing full well I can't eat anything by 5pm on the 'best before date' for fear of food poisoning, mould, or fly lavae instantly appearing.)

Then we notice the packet has a 'Display Until' date, which reads : Display Until 19/01/11.

Yuk.  How can a shop with a reputation for quality such as M&S have such lax stock control?  I'm definitely going to complain about that..  1 day past the 'Display Until' date is bad enough (but I'd accept it), but we're talking 13 days - Thirteen days of somebody not being bothered to do their job and do stock rotation.

I wonder what I've done with my receipt..  It's not in my wallet.  Typical - only bought them yesterday, and I think I've thrown the receipt away..  damn it.


It's nearly lunchtime - Joel is still in his old dressing from when he was admitted on Monday.  It's slipped a bit so it's not actually covering the wound, but just off to the side of it.  Why hasn't the nurse changed it and put a bandage on?  Rebecca the physiotherapist visits Joel and needs to do some physio with him, but as he's waiting for his dressing to be changed, she asks if we can come down to the gym at about 1.15 - by which time it should be done, and we can get back in time for his antibiotic delivery at 2pm.

Joel has his lunch.  Still no sign of the nurse for Joel. We've hardly seen her all morning, yet she's only got 4 patients to look after.  She must be very busy, so we don't argue or chase it up.

1.10pm and we need to go to physio..  Joel still has the same wonky dressing on with no bandage. There's still no sign of his nurse.

While we wait for Rebecca to see us into the gym, Joel is taking HUNDREDS of photos on his iPod..  he's laughing, and being silly with us..  it's great... I try to take a shot and Joel refuses to co-operate..  so I trick him into laughing while I'm ready to take a snapshot..   It almost works..  he moves at the last minute and I get a lovely sharp shot of the bin behind him...  but the laughter makes it a 'keeper' for me.




Rebecca runs through a couple of preliminary checks with Joel on the big huge physio bed.  She tests his tendon reactions in his ankle, heel, and knees...  and as he lays back on the bed and gets up to put his shoes back on to start his exercises, we notice the paper on the pillow is wet.  Joel is leaking CSF again.  Rebecca cancels the physio session and we head back up to the ward.  I'm gutted, and worried about the leak.  I really don't want Joel to have a shunt...  and I'm angry that the nurse hasn't followed the doctors instructions yet, some four hours later.

2pm comes...  and goes.  No antibiotics.  I go and make a cup of tea.  I see Joel's nurse on the way..  she's blow drying a patient's hair while the patient's parent/guardian stands by and watches.  Lovely.  Welcome to your local NHS Babysitting Service - Now with added Hairdressing.

Why is Joel's nurse drying someone's hair instead of tending to medical needs of her patients?  Why hasn't she changed Joel's dressing and bandage yet?  She's only got 4 patients to look after and so far she's done bugger all for Joel.  Every time she tries to do his obs, Joel gets all frustrated - she has NO bedside manner or rapport with him.  Instead of being nice and trying to calm him down or have fun with him, she chastises him, then turns it on us - patronising us by saying "I can't do his obs when he's behaving like this!" - as if it's OUR fault..  she may as well just say "Will you control your child???".  Well no - he's been fine with every nurse he's had so far, because they've all engaged with him and spoken to him like he's a nervous 6 year old boy in hospital.  She's treating him like a snotty teenager hanging around the corner shop.

By tea time, Joel wants to go to the restaurant again.  It's nice being able to go as a family...  though Joel has already eaten his tea at his bed, it gives Louise and I a chance to go and sit at a table with a hot meal, and Joel can have a packet of fruit pastilles.  It's 6.30pm.  He's not had his antibiotics yet which were due at 2pm.  Neither has he had his dressing changed and a fresh bandage.  We wait before going to the restaurant as we don't want to go until Joel has had his antibiotics..   The nurse comes with the machine and sets Joel up for his antibiotics.  Great - over 4 hours late, and just as we want to go to the restaurant.  30 minutes later his drip has finished and we can go to the restaurant.  We get everything ready, tidy up Steve & Backshall (Joel's nickname for his Hickman line) and head down to the restaurant.  We get there at 7.48pm...  to find it shuts at 7.45pm.



While we have a drawer full of sweets to quell the inevitable tantrum due to the lack of fruit pastilles from the restaurant, it still means WE go hungry...  I decide to have a ready meal from the fridge..  I double check the date after the cookie episode, and go for the Spicy Meatballs with spaghetti.  I follow the microwave instructions to the letter, and the meatballs look horrible.  they're bright pink inside, yet scorching.  Then I see a bit that doesn't look meaty, and reminds me that Joel is in the neurosurgical ward.  I decide not to risk it, and leave that bit on the side of the plate.  The rest of the meatballs don't fare much better to be honest.  I have a bad feeling about this.


About 8pm after the shift change, Joel's new nurse sorts out the dressing and bandage that was requested about 11 hours ago by Dr. Solanki.  With 4 patients to look after during the day, the previous nurse must have been rushed off her poor little feet to not be able to sort that out....  or to be able to get Joel's blood pressure due to his 'unacceptable behaviour'.

Funnily enough, the new nurse manages to get his blood pressure first time..  the difference between her and the previous nurse?  A nice attitude, friendly, and spoke to him like a child having fun...  instead of someone who found their job an unrewarding chore.

I'll call the 'nasty' nurse "Nurse X" in future....


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