Saturday 22 January 2011

Get up, Stand up.

Mommy with Joel, Pre-Op."A vet..  and a dentist.... and a shark expert"

 

Joel said that when he grows up, he wants to be a vet.  He loves animals.  Especially sharks. Then he said he wanted to be a dentist.  This gets me worried about the dangers of that mixture.
Why can't he like rabbits or budgies like other kids?

 

Today is likely to be busy...  not in terms of Joel's physio or tests, but with the volume of family descending on Joel today rather than spreading out over tomorrow as well..  I've driven in this morning (lovely quick journey along the usually weekday gridlocked M6) - took me less than 20 minutes to get from Walsall to the Hospital, and the main carpark outside the main entrance had free spaces.. Grand.

I've brought with me, Eve, Marion (Louise's Aunty), and Joyce (Louise's mom). Later on, Louise's Sister will be coming, with her husband..  and possibly Thomas and Keeley (Joel's cousins).. I'm not sure.  Anyway, it's going to be busy today, and quiet tomorrow.  Not sure how I'm going to get Eve home tomorrow..  or tonight actually...  
In the week, Eve's Uncle David (Louise's brother!) brought her to the hospital from school with her nan, so I booked them a taxi from the ward to take them home..  "How much is it?" I asked when booking..  "About £16 mate..  where abouts in Walsall are they going?" the operator queried.  "Right off Junction 10 of the M6"..  "Yes mate, £16 is fine.".  So I'm thinking maybe it's only £14-15 then...  never mind, as long as they get home safe.

So the taxi picked them up and took them the bus route home..  A34, through Bescot, Pleck...  wtf ??  I live no-where NEAR Bescot or Pleck...   then he charged them £18 after I'd been quoted £16..  I won't book that taxi firm again.

Anyway, today, Joel walked the length of the corridor to greet us at the door.  Eve went up to him and it was like something out of Here To Eternity..  they embraced and gave each other such loving hugs..  Eve patting him gently on the back and squeezing him gingerly..  Joel with his arms reached around Eve and his head resting on her shoulder...

The girls (IE: Everyone but Joel and I) have gone out to the city centre to do a bit of girly shopping.  I'm here with Joel, and we've read about 5 chapters of Beast Quest book 2, "Sepron".  I couldn't help but read it out aloud to Joel in my best Richard Burton voice "Suddenley, the wave crashed".  I was very chuffed...  until Joel pointed out the voice for the girl sounded like a man....  These were dark days I thought..  they had no time for femininity when they had Dragons and Sea Serpents to battle.

Joel said he was tired..  probably tired of my Richard Burton voice.. so I suggested he lie down for a while, and he nodded - looking ever so tired and forlorn. I tucked him into bed, put his headrest at about 10 degrees and stroked his hair for a few seconds and he was fast asleep.

You can tell when Joel is tired..  he has a really cute habit of tugging at his hair on his brow..  just twisting it around his fingers..  I never liked it - I'm a back rub person...  My dad liked his brow massaged, I love my back rubbed..  Joel loves his brow massaged, and Eve likes her back rubbed..  funny old game genetics.  Not sure where the brain tumour comes from though, and will probably never know.

 

About 5 minutes after Joel had gone to sleep, Colin, one of the auxiliary nurses came in with the menu for tomorrow..  typical..  Joel had JUST gone to sleep and he's expected to choose what he wants to eat for dinner and supper tomorrow.  I didn't even know what I fancied for lunch TODAY, let alone tomorrow.  I asked Colin if I could do it later and he said yeah, no problem.  To be honest, I expected more than 5 minutes before asking for it again, but I appreciate they have a lot of patients to cater for.  Colin tells me that some parents have been ticking several boxes from each course, and adds 'just be sensible' with a sort of wink to acknowledge that asking for a bit extra will be ok, but don't take the p..s.
Joel wants a fruit bag for his pudding tomorrow night...  I write on the sheet "If possible, could Joel also have a chocolate sweet eg: Kit Kat" underneath it.  I don't think that's asking too much, considering all the other parents ticking several boxes on a daily basis AND GETTING IT..  but still feel guilty..  It makes me as bad as them, so I can't moan now.  Well, I can if he doesn't get his Kit Kat.

5 minutes after that, TODAY's lunch came, and Joel woke.. as if he smelled the food.  He remembered what he ordered..  which is good.  I couldn't, and I've not just undergone brain surgery. Perhaps I should?

"What have you got Joel?" I quizzed...  half of me testing his memory and the other half trying to remember for myself...

"Barbecue Chicken" he drawled..  Yesterday his speech was great..  he was reading with intonation and expression again, but at lunch, his speech was back to slow, cumbersome, and stumbling.  I'm disappointed, after yesterday's display, but I know that it's either the medication, tiredness, or the swelling still in his brain..  They're cutting down the steroids so the reduction in the swelling isn't moving as fast as it has..  I'm not worried about it in the long term, I've seen it almost completely back to normal since the operation, but of course, you feel like you've just tripped over a hurdle when you see he's not the same boy he was yesterday or at Christmas.

He tucks into his wrap like he's not eaten for days...  I don't know who prepared it, but they can do my sandwiches ANY day of the week - it was PLASTERED in barbecue sauce..  yummy.

True to form, the first lump of chicken dropped on the bed sheets..  I scrambled for a wipe to clean it off the bed sheet, only to smear the sticky brown sauce all along it.  God knows what the nurses will think later, but I'm sure they've dealt with far worse.  It could have been marmite, after all.

 

At the end of the first wrap, I can see he's struggling.  "Do you want any more?".  He shakes his head..  "Fruit please" and motions to the bag of fruit..  he picks it up and tries to open the packet.  It's a tough one, but I help him..  "What do you want first, a grape or an apple?" I ask, as I offer a grape as an apple, and an apple slice as a grape.  He giggles - this warms me..  but there's still that slight awkwardness to his smile where his left side isn't lifting as much as the right..  Again, we've seen both sides acting equal, so I'm not too worried about it - and even if that is permanent, it's not obvious..  I don't think it's going to stop him working in Hollywood anyway.. or swimming with sharks.  Again, I offer him a grape and say "Apple?".  He giggles some more and tells me "That's not an apple, you're silly!  It's a grape!" He grasps it and I ask him to bite it rather than put it in his mouth whole...  I'm treating him like a baby..  Should I?  I think so..  I realise that I did this before he showed symptoms anyway...  I've always been terrified of the kids choking on food.  I only let Eve have chewing gum in the last couple of months..  she's had 3 pieces in her life.  I wonder if that is going to lead to trouble later on?  Drink and drugs perhaps?  "It's my fathers fault..  He wouldn't let me have chewing gum or boiled sweets as a child..."

You try to do the best for your children, to protect them..  wrap them in cotton wool - while realising that they need to experience danger.  Not that chewing gum or Chupa-Chups pose any greater risk than crossing the road outside school or walking around the bathroom with the toothbrush in your mouth...  but this brings me back to Joel..  facing possibly the greatest challenge he'll ever have in life - and I've never let him have a piece of chewing gum.

 

While I'm thinking about this, the door opens and family start to arrive.  Part of me welcomes the company..  but secretly (or not so now it's written here) I just want to be alone with Joel for a while, to savour every moment I can with him - just him and me, giggling, being silly, sharing each other and holding hands.  Before long, everyone is here..  the room is crowded - far too crowded.  There are only 2 visitors allowed per bed, and there are TEN people in this small room, already overcrowded with balloons, teddy bears, lunch, and luggage.  Joel doesn't look too well either - he's getting excitable and there's too much going on in the room for him to relax.  I start to lose my patience..  I don't want everyone there - I'm sure the medical staff don't either - but it's family. What do I do?  Avoid confrontation. I evacuate to the parents room and simmer.

I sip a cup of tea while sat in the parents room, then half the family join me. I'm relieved that Joel has some space.  The girls came back with a pizza. They'd eaten in the Bullring Pizza Hut, and brought a takeaway for me. Although, Louise said to her mom that it would be fine carried in a carrier bag, so it was less of a pizza and more 'dollop' in a corner of the box when it arrived back at the hospital.  I think the proper Italian term is Calzone.

I tried to flatten out a few slices of pizza onto a plate and work out which bits of ham, pineapple and cheese belong to which slice..  then upon inserting the plate into the communal microwave, I realise the square plate won't rotate in that oven.  So I transfer it to a small plate, with edges hanging over the side of the plate.  I have no idea how this microwave works, and I've got half the family moaning about something in the background so I just hit some buttons and stare at the pizza as it turns around.  It pops and fizzles, and doesn't sound quite right, but it tastes ok.  I'm standing up trying to eat my lunch, when Colin enters the parents room to check the fridge and throw out any unlabelled food..  Personally Colin, I wouldn't bother throwing it out.. There's some thieving git on the ward going through all the labelled stuff anyway so it'll go sooner or later, regardless.

He goes to walk out of the kitchen and nods at the pizza on my plate..  "Smells good" he says..  
I have one of those instinctive reactions where you say something but don't actually mean it - knowing that good manners on the other persons part means that you can get away with saying what you don't mean anyway...

"Have a piece if you like"...   "Oooh, do you mind?".  Gobsmacked.  Joel had better get that bloody Kit Kat now.   I warm another piece of the once perfectly shaped pizza and start eating it..  desperate to get back to Joel, but knowing that if I go back, so will the rest of the family...

Before long, people make their move and it's back to just 2 visitors (not counting myself and Louise, we're allowed, and we won't count Eve as she's a VIP... :))

Louise also took a trip to Krispy Kreme and bought some donuts..  Lovely!  I asked Louise if she knew about the Double Dozen deal..  Apparently she does, and bought the second box of plain ring donuts for the staff.  So Colin had my pizza, AND he's got a donut for dessert as well.

That Kit-Kat had better be one of the chunky ones as well.

 

The girly shopping took them to The Entertainer to buy something for Joel (more Lego!), then the Disney Store where Eve was bought some Hannah Montana vastly overpriced merchandise, including pink glittery boots and I think it's a makeup box..  why they'd make a makeup box for that age group I have no idea, but in any case, when she opened it at the hospital, the mirror inside was broken..  so that's going back.  If the boots are still in one piece and she's able to walk back there of course.

Nanny Joyce bought Joel a "Lotso" bear from the Disney store.  So did Aunty Marion.  That's Lotso Huggin...

Welcome To Sunnyside Folks."and he smells like Strawberries!"

 

 

Joel is very excited with the lego..  A combine harvester..  Looks complicated.  I envisage pieces of lego being discovered for months to come in every nook and cranny in the room...  but Joel sits there, patiently..  tongue out, concentrating on the shiny plastic bricks.

He's showing signs of the tumour...  He's very trembly when he's piecing the bricks together.  His dexterity and co-ordination is great generally - he can type on the laptop, even on the ipod..  but as per the location of the tumour, it's the 'fine motor control' that is affected, and it's really showing.  He's trying to place the bricks together and he's struggling to align them..  I suggest to him that he slows down, takes his time and to try and line the pieces up before trying to squeeze them together..  he nods, but that's clearly not the problem..  it's like watching someone with parkinsons disease trying to build the model.

Engineer at work...

He's doing very well - already halfway through the instruction book - BY HIMSELF except for a bit of tightening of the bricks, when he slips and breaks a small part off the bit he's working on.  In frustration, he tears the model apart and flings them on the table, bouncing the bricks all over the room.  It's a tantrum, brought on by frustration, a desire for perfection, and I suspect a great deal of stress and tiredness.

He starts shouting, and while not screaming, it's a raised voice.. full of anger..  at himself, not us.  Then he does something he's not done before...  He pulls the bed sheet over him, and sits there.  Ignored.

We know there'll be times like this...  He's shown signs of OCD before - but we don't think he has it..  but he does like certain order.  He's been in supermarkets before and re-stacked displays where tins of beans or whatever have been out of alignment, or put things back in alphabetical order when not asked..  I think I should get him working on my CD collection - but then, I'd rather they not get smashed if he gets frustrated while doing that.

 

Go Away! "Leave me alone!!"

 

After a few minutes, he emerges, calm as you like, and starts to build it again.  This time, he asks for help on a couple of tricky bits..  one of them even I fail..  I cannot get the little chubby fat farmer to sit in his seat. I think it's the coffee mug that's blocking the steering wheel..  but he shouldn't be driving heavy machinery while holding a hot beverage anyway..  a few minutes later, that little chubby lego farmer has vanished..  I suspect he may be at the canteen arguing over the price of brown sauce to go on his bacon sandwich...  I'm sure he'll turn up.. probably in a few months time in the post, after being discovered blocking the oxygen supply to the ward or something.

At about 4pm, it's time for Eve to go home with nanny Joyce and Aunty Marion.  There's a little disconcerting moment where I think I'm expected to give them a lift home..  I thought it was made quite clear early on that I wouldn't be ferrying family around to the hospital - I want to be there for Joel, not being a taxi for everyone.  I insist on paying the taxi fare for them, but they refuse, telling me "family should do things for one another".  I agree that family is there to fall back on in times of need, but that doesn't mean they have to be out of pocket for it....  They still refuse the taxi fare.  Fortunately tonight, they get a taxi driver with a sat nav, who correctly charges them £16 and goes up the motorway instead of around all the industrial units in Walsall.

We have remarkably few tears from Eve..  Although there are a few, I remind her that I'll be bringing her back at about 9am tomorrow morning for another girly day shopping (for that, read: "returning faulty goods to Disney store") and possibly getting another donut or two for daddy.

Joel continues his lego.  He's fighting tiredness, but he's adamant he's going to finish it today.  And he does.  By about 7pm, he's built the Lego Combine Harvester - almost entirely by himself, shaky hands and all.

I'm pleased as punch - because as he progressed through the model, you could see his finger control getting better and better, and he wasn't shaking half as much toward the end of the model.

Ta-Da!!!"Ta-Da!!!!"

 

He completes it, then says "I'll have a lie down now"...  then lies down, and goes to sleep, with me lying half on the bed next to him, rubbing his back.  He doesn't seem to mind. Frankly, neither do I.

 

Louise lies on the camp bed next to Joel's.  She's in her PJ's, washed, teeth brushed, ready to sleep... one thing missing.  Bed sheets.  The lights are about to be switched off on the ward, and the nurse opens our door and asks us to turn the lights off. Louise asks her for some bed linen.  The nurse quite sharply says "Let me switch the ward lights off first", and disappears, but not before reminding Louise to turn the room light off.

30 minutes later, I'm still lying next to Joel, Louise is still lying on a bare camp bed when a different nurse enters the room to check on Joel. Again, Louise asks for some bed sheets..  The other nurse had finished her shift, and quickly shifted off.   Fresh bed sheets are brought for Louise in next to no time, and almost immediately, Louise is dropping off to sleep.  I honestly don't know how she has the strength to stay awake as long as she does..  I was almost falling asleep at several times during the day..  not just because of Beast Quest (The Richard Burton voice does take it's toll, I tell you.).

Tomorrow we'll have it all again, but with fewer visitors in the room at a time hopefully.  I know everyone wants to see Joel and wish him all the best - that's really nice and I don't mind that - but 10 people in a small room is too much for a little boy who needs rest - especially when the limit is meant to be 2 people.  I'm going to upset family by saying that, but there you go. I'm not snaping anyone or saying I don't want them to visit, but there are 7 days in the week.  Everyone doesn't need to come at the same time..  I'm concerned with Joel's recovery, NOT whether everyone gets equal dibs on seeing him at their convenience.

He's had more visitors in two hours today than he's had all week since he was admitted to hospital.  That's not fair, or healthy.

1 comment:

  1. Hello, I have discovered your blog by accident, and I will continue to check on Joels progress, and remind myself to be a better and more patient mum!
    I wanted to share with you the story of Poppy Guilder, a little girl at my sons school, who is also in constant recovery from a tumour as an even younger child. They can be found on facebook at 'Poppy Fields Appeal (Birmingham Children's Hospital)'. I beleive they run a support group for parents in a similar position to you, so I hope it helps if you need it.
    Finally, I am blown away by the bravery of families and particularly the children in these situations, and I am crossing everything for the best outcome for you. Sharon

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