Paige & Imogen when they were small.
Someone said to me last week, ‘you know Jo, there are people out there worse of than you… but I’ll be stuffed if I could travel far enough to find them’ and we laughed.
This week has been like a real test of my humor, I’ve hung on in there because what choice do you have when you have 6 children depending on you ?
The week started pretty nicely, Monday morning I put my son in to creche for 2 hours and met my lovely friend Carolyn for coffee, then did an hours charity admin. It was a nice start to the week and I felt fairly positive.
Tuesday, Paige woke up wheezing and looking in bad shape. She has a nasty bedsore that has a bacterial infection and is on antibiotics for this. Any change in her general well being needs to be checked. I don’t normally have Paige’s carer here on a Tuesday however she was extremely concerned too and we called the doctors. We were triaged and in the afternoon a doctor came out, the doctor prescribed more antibiotics, this time for a respiratory infection.
Wednesday, Paige was yet to show any improvement, lapsing in and out of sleep and barely eating or drinking. I had a phonecall to tell me Paige’s direct payments (my carers wages had been ‘misplaced’ by the council). Then medical engineering came out and tried to do some work on Paige’s wheelchair, she couldn’t face being hoisted in to her chair so they ended up taking it away to work on.
Later that day my second eldest, my 14 year old daughter, walked in from school shaking. She said she’d just sent me a text saying she was at the top of our road and would be home in 5 minutes when a man in a car pulled over and asked her if she wanted to get in his car and get a lift anywhere. It was only 20 past 4 in the afternoon but no one else had been around.
We thought about it and decided we should probably phone it in and let the police just know in case there was someone around trying to pick kids up, we gave all the information she could remember.
Thankfully she was fine but it made things very real to her, she said all she could think was that she hoped he left her alone as she’d only just texted saying she’d be home in 5 and I’d wonder what had happened to her. It is a scary thought. She told her friends who took the mickey and said he might just have been trying to be kind! 20 or so years ago maybe, but these days I think most men know better than to ask a school girl if she’d like to get in his car.
Thursday, the police went in to my daughter’s school to take more details and talk to her about safety. They also said they’d be stepping up their presence in the area at school run times, they genuinely have too, I’m very impressed.
Medical engineering brought my daughter’s wheelchair back, she’d had pressure mapping done the week before so they’d done some tweaking. I’d got my son to creche again for an hour but noticed some of the little ones there looked, well quite full of germs
Friday, Paige’s temperature had started to rise and she still wasn’t looking to great. I spent the day monitoring her temperature every half hour. She picked up in the afternoon and ate and drank quite well. I don’t have a carer on a Friday and it was a very long lonely day and I was nervous every time I took Paige’s temperature. She didn’t have a wee until lunchtime and was dry for the rest of the day which made me nervous.
Social services finally found my Direct Payment money, it had been paid to another company! So they were in the process of reclaiming it.
My son (Ben) wasn’t looking too good by bedtime and he had a temperature and was up during the night.
Saturday, Paige still hadn’t done a wee. By lunchtime her temperature had risen too. We called the out of hours doctor. Spoke to a nurse and then a GP. It couldn’t be decided whose responsibility Paige was. Pediatric nurses don’t work weekends but community nurses won’t touch the under 18′s. We were told they were phoning around to see who could see her. 2 hours later we’d heard nothing. Thankfully my Mum is good friends with a district nurse who although wasn’t on duty this weekend still very kindly rang around for us to find out what was happening. Thanks to her a doctor came straight out! If it hadn’t been for her we’d have had to just call for an ambulance, which is just ridiculous.
The doctor wasn’t well practiced in catheterization and failed to get a catheter in. Paige had gone ballistic and I had to try hold her still while the doctor tried to get the catheter in. Paige scratched and bit me in panic and screamed and cried her lungs out. The doctor then said it would be a hospital job and that she’d go to her car and call an ambulance out.
I packed my bags and as I did so I found my 14 year old daughter curled up on her bed sobbing her heart out, she asked me how she was supposed to just live and carry on if anything ever happened to Paige. I hugged her and told her now was not the time for tears, Paige was fine (in the sense she was with us) and that I really needed her to be strong while I wasn’t here.
At that the doctor came back in and said she’d spoken to Paige’s hospital consultant who had said Paige could stay home another night but if she still wasn’t wet by tomorrow that we’d have to take her in for a scan of her bladder and catheterization.
The calpol is controlling Ben’s temperature and I had another long chat and hug with my 14 year old.
The doctor had told us to increase Paige’s macrogol (great idea if I could make her drink) and lactulose. I spend the evening by her bed begging her to drink while she begs me to stop, taking her temperature and checking her nappy.
It looks like a stay in hospital tomorrow and when they get Paige in they’re not hasty in discharging. This also means I have to stay with her, which will most likely mean my husband will have to have a day of work. I’m going to have to stay up tonight to sort uniforms and school stuff for the week. I’m also going to have to take Owen to the sports shop at 10am tomorrow before I go for wellies as he has a school trip on Monday. I most likely won’t be able to be there at home to prepare him, this isn’t good with his autism I also have a committee meeting on Monday morning, an important one, I’m not sure I’ll make it, it’s looking doubtful.
Something nice did happen today, I got sent a generous donation for the charity and a lovely card from a very kind and compassionate lady I am friends with on Twitter, Michelle. I know some people don’t ‘get’ Twitter or why you’d make friends on Twitter but ‘whatever’ as my teen would say. I have met some of the loveliest, kindest, caring friends on there and yes they are real and I have met one recently
And so that has been my week,so far, minus some other bits and bobs, like my husband’s car not starting the other day and there’s still tomorrow to get through yet.
If you see my sense of humor anywhere you know where to return it If I’m honest, when I go to bed at night now I’m almost scared to wake up in the morning. 13 months (and no of course I’m not counting) of life punching me in the stomach every time I stand up is proving hard to endure even by my standards and I’m pretty nails, I mean I’ve had 6 children with no pain relief! (I did beg for it to be fair, just never got any…just my luck ;-))
I feel sad every day though lately, I see friends and family achieving things, studying, going on holidays and all the time I’m just praying my daughter will keep going, that we’ll be able to keep her going. That she won’t wake up in pain, that her breathing will be OK, that she will do a wee, that she will eat, that she will drink.
I’m not depressed, I’ll grant you I sound it, but I’m not. I just can’t help but feel what I’m experiencing and what I’m experiencing makes me sad at points during the day. I’d be a liar not to admit it and a robot not to feel it.
I don’t know what anyone will take from this post, I wrote it self indulgently, it’s cathartic for me. If anyone takes anything from it then I guess I’d just like for you to go away and hug your loved ones and to treasure the here and now, I am aware that sounds crass and cliched. I’m to tired to think of a better way of putting that sentiment so apologies.
In the words of Arnie, I’ll be back ;-). Wishing you all a good week, Jo