Tuesday. Wake up feeling terrible. One of those "can't be bothered" moods. After yesterday, I'm feeling physically and emotionally exhausted.. I struggle to get myself out of bed, showered, dressed and ready to take Eve to school. I'm all over the place. I drop Eve off at school and head to the hospital.
Louise hasn't called, so I should think everything is ok with Joel, but I can't be positive. Perhaps her phone battery has died? Perhaps something has happened to Joel and she can't bring herself to call... Lots of thoughts go through my head, most of them induce fear in me.
I get to the hospital and the only parking space I can find is on the very top level.. my knees hurt, so I'm not looking forward to walking down the 5 flights of steps. I still can't believe the hospital give parents parking access to a multi-storey with a decommissioned lift and no wheelchair access.
I get half way down the staircase and my knee gives way.. I curse and it echos in the stairwell. For some reason I think about the fact that a ducks quack doesn't echo. I have no idea if that's true. I should bring one of the ducks in tomorrow to test the theory.. but regardless, my swearing does echo - that IS true.
I get to the ward and I'm dreading arriving at the bay, unsure of what I'm going to find.. I get some strange looks from parents, and a few from nursing staff, a mixture of angry and sympathetic.. As I arrive at Bay 9, Louise is sat there, looking dishevelled. Joel is sat upright, and looks tired as well. He didn't sleep all night, and wailed loudly, constantly. The pressure bandage around his head from the night before was very tight, as you'd expect it to be, but we had no idea that his ears had been folded over during the bandaging, and not straightened out. It must have been really uncomfortable, and when the bandage was changed early this morning, the tips of his ears were bright red and crease marks have been left there where they were folded over. There was also indentation across his forehead when the bandage had marked his head.. no wonder he screamed all night long.
The change of bandage around Joel's head was a welcome one.. he seemed much more relaxed now, but it wouldn't last long. He's currently nil by mouth, as he's booked for a CT Scan this morning and may need an operation this afternoon. They aren't sure why the CSF leak was so bad - they say it can leak a small amount, which is natural after these operations, but the severity of this leak might mean he needs a 'shunt' - either a Cerebral shunt or a Lumbar-peritoneal shunt
The consultant really doesn't want to do this, as it increases the risk of infection and more seriously, increases the chances of brain damage.. although incredibly slim - it's still a chance he doesn't want to take.
By late morning, Joel is getting low blood sugar, and getting stroppy with it. We have a kicking fit, a punching fit, and a screaming fit. We give the silent treatment.. it's hard, but we sit there and take it.. We don't raise our voices, but just tell him that it's not nice.
We need a few things from the shops, so I nip into the city centre and come back with some essentials.. plus a few not so essentials.. I bought some Marks & Spencers cookies in the 2 for £2.50 offer - Lemon Meringue and Apple Crumble.. I bought some full on flavour Ham & Mustard crisps, and some Chicken with Honey and Mustard Pasta Salad. Delish... Even better when you mix both together..
I post a letter for Louise, and head back to the hospital after a breath of relatively fresh air (as fresh as it can get when you're surrounded by cars, pigeons, seagulls, and dog faeces on the pavement).
Eventually, Joel is called for a CT scan and we head down to Radiology again. Joel seems to be in pain as he's shuffled into position on the scanner bed... but it looks like it's just hunger getting to him. He hasn't had a drink since before he was admitted to hospital last night, so you can imagine how irritated he feels.. Can you picture how you feel when you're really thirsty and crave a cool refreshing drink but have no access? Doesn't happen to me very often, but when it does, I'm incredibly agitated and stressed. I felt myself getting thirsty earlier, but refrained from having a drink out of respect for Joel - I didn't want to drink in front of him, as that would not only be unfair but would only exacerbate the situation. I also felt it unfair to be able to refresh myself, so sat there getting more irritated myself.. A stupid theory in hindsight, but I really felt selfish at being able to drink when he'd not had a drink for over 16 hours. His lips were pale and crisp - with texture of roast chicken skin.. I imagined a big smile would crack the skin of his lower lip - it looked painfully dehydrated.
CT Scan over, we return to the ward. Joel wants to go to the restaurant.. but while the nurse says it's shouldn't be a problem for us to go, we need to wait for the doctor to check the scan results to see if he needs the operation - otherwise he'll remain nil by mouth...
Mr Solanki comes up to the ward and asks if we'd like to see the scans.. I get a bit anxious as it was almost like "Would you care to come and take a seat?".. but we go to the nurses station. Joel is wheeled behind the nurses desk and sits there keeping an eye on the ward. Given the chance, he'd pick the phone up and deal with any incoming calls.. we're focused on the monitor screen in front of us. Mr Solanki shows us the CT scan from today, side by side with a scan from last Friday, 28th. The difference is amazing - everything seems to be getting back to some kind of normality.. the ventricles closing up nicely.. though there are still some pockets of fluid, they're clearly reduced from the previous scan. But this doesn't answer the question we all want to know - why is it the CSF leaking, and is it likely to leak again?
Because the answer is unknown, they're going to keep him in until Friday at the earliest. Strangely, we both feel better at knowing this... we all feel safe. However, I realise that yesterday we'd visited the Birmingham City shop to buy Joel a shirt for him to get signed tomorrow when he's a mascot.. he's not going to be able to go to that.. we're gutted.. I write an email to the organisers of the trust who had arranged for Joel's Mascot package and explain that we can't make it, and wonder if it can be rescheduled. I don't hold out much hope - it's a £450 package, so I think it may be a blown chance. I'm sad for Joel. Still, at least he's got a new football, and a BCFC hat. And an extra large adult Away shirt (which he was going to take to be signed).. Just a pity he supports Liverpool.
Talking of Liverpool - I'm laughing as I write this... My uncle John who comes to visit frequently came a few days ago with a present for Joel... Now a bit of background history - as a child, my uncle John would only have to touch any of my toys to pick up and look at - and that was it - the toy was doomed.. they would inevitably break a few hours afterward.. without fail, every toy or device of mine that he touched would break shortly after. He was a jinx. I love him dearly, but he's a jinx.
John bought Joel a Liverpool shirt with Torres on it.. Joel has always raved about Torres, and Liverpool... we didn't realise he liked football at all, but he reeled off all the Liverpool players, and told us he also likes Steven Gerrard... Well... What happens within 48 hours of John buying the shirt? Torres transfers to Chelsea for £50m. Sorry Joel, but John's curse continues.... I wonder if he still has the receipt?
Joel goes to sleep easy tonight.. hardly surprising given he didn't sleep last night. I get to sleep quite easy too... but wake at 3am and worry sick in case it's some kind of synchronicity.... is Joel ok? That makes it more difficult for me to get back to sleep.