I got up early this morning to pack Jack's bag for his weekend in Alba Place. He was due in tonight for 3 nights respite. Obviously I didn't even know at this point if he would be able to go but at least I had a bag ready that would do for the hospital or respite.
I was just heading out the door to take Holly to school when she took a call from Granny Mac saying that Jack had taken a big seizures last night while she was with him. Holly didn't get any more details but I knew that this was probably big enough to warrant rescue meds, again.
The drive to the High School was pretty hairy, it had snowed all night and the roads were horrendous. My car was slipping and sliding all the way there. Both Holly and I were a bit stressed. Holly was quietly stressing because we were running late, constantly checking her watch and it was making me stressed cos the roads were so lethal. I was getting cranky cos I could see her constantly checking her watch every two minutes and I kept telling her that they couldn't expect her to be on time in this weather and she was snapping that she wasn't worried even though she obviously was!! What a pair we are.
In the middle of this, Jilly phoned from Alba Place asking if Jack was definitely coming in this weekend but as I was driving, she told Holly that she would call me back in 10 mins.
After dropping off Holz I slowly made my way to the hospital and was ever so blinking glad to get there in one piece! I quickly called Jilly back.
I told her that he definitely would not be staying tonight but maybe Saturday or Sunday but I would let her know as soon as the ward round was over. Then I hauled Jack's wheelchair out of the car and headed up to Ward 2.
My wee man was sleeping peacefully when I arrived. Nicki, the nurse looking after him, told me that he had had to have Midazolam last night as the seizure was over 12 mins. My heart sank when she said this cos I was kinda hoping that I was wrong but no such luck.
The paediatrician appeared and suggested that since Jack had a big seizure again then we should up his Clobazam temporarily as per Neurologist in Edinburgh's advice. The first dose would be given at lunch time since he had already had his morning meds and then tomorrow it would be split between the morning and evening meds. Obviously he needed to be kept in while they did this so no respite for him and no going home either. AAAAAHHHHHHHHHHH! I am so bloody knackered and that is a weekend of respite lost cos if it has to be cancelled for whatever reason, you don't get given an alternative slot.
Another quick call to Jilly cancelling Jack's weekend then we gave Jack a bath which he slept through only reacting when I rinsed his hair but then he went back to sleep! How many kids do you know that can do that huh? It's an art he has perfected believe me!
Once he was dressed and in his chair, he seemed to wake up a bit and Sandra, the play therapist, brought him some fibre optic lights and some tactile toys to play with. We spent an hour playing with him and he was really enjoying himself until he had a wee seizure. After the seizure he wasn't interested in playing so I just sang to him instead. He loves that and he kept trying to keep his eyes open to look at me. I was singing lots of Christmas songs and then I sang my favourite to him Fairytale of New York.
It was going really well until I sang " I could have been someone, well so could anyone, you took my dreams from me when I first found you. I kept them with me babe, put them with my own, can't make it all alone, I built my dreams around you" and I was totally caught off guard by the tears that were choking me. I didn't know why but the words seemed so apt for him and me, that he put my dreams with his cos he couldn't make it without me. Silly I know, cos the song is not about anything remotely like our situation but today it just really affected me.
My dad arrived shortly after and the three of us headed down to the café for a change of scenery. When we got back my dad made me laugh when he shook his fist at Jack and said "you'd better get better wee man or I will fist ya!". That sent me into fits of giggles cos it is a private joke which I will now let you into.
About 5 years ago, Jack spent 6 weeks in hospital in Dundee. My dad, who would have been in his late sixties at the time took to shaking his fist at Jack, jokingly telling him that he'd better get better or my dad would fist him! The first time he did it, I had a wee chuckle to myself but after he'd said it numerous times in front of various nurses, doctors and specialists and seeing their reactions I really had to tell him what that actually meant.
You can imagine, telling your dad that something he is being totally innocent about is actually a sexual act isn't exactly high on my list of fun things to do! You should have seen the look of incredulity on his face and he was like "EH????? No Way!" He was a wee bit embarrassed cos in his day, fisting someone meant they were gonna get a punch in the face!!! Then we had a good laugh about it especially when I said that he'd better watch that they don't report him for being a bit of a pedo!!
He had the last laugh though cos unbeknown to me, all the staff thought he was Jack's dad!!! And he let them. It took about 3 wks to discover that they were calling him Jack's dad and it was only because a play therapist leaned in and said to Jack "look here come dad and mum". I looked behind me to see if Father of the Year had miraculously appeared behind me and when there was no one there, I looked back and caught my dad chuckling away to himself. I know he looks young, but not THAT young!
I soon put them right let me tell you and I didn't know whether to be more offended that they would think I was into older men or that they thought I looked as old as him. I spent the next 3 weeks calling out DAD quite loudly so that they would know he was my dad and not Jack's.
Oh the trauma!