Hi from snowy Scotland

Just a quick post. I am home for a couple of days to recharge my batteries as I am completely exhausted. I just want to be with my girlie Holly and to just chill for a day or two.

It's been a tough two weeks but finally Jack is out of HDU and into the normal ward. His seizures are still a bit crazy but thankfully he is off the medicine that caused another bad reaction. It is enough to put me off trying anything new ever again.

His chest was bad too as he aspirates all the saliva that the seizures produce and then it becomes infected in his lungs. He has had some intense physiotherapy and suction, once again, and now I am a demon with the suction machine. I still hate doing it but hey, it has to be done.

I have been overwhelmed by the support, comfort and help from people, far and wide over these last two months and I thank Bouncin' Barb for emailing me and then updating you all on her blog. She is such a star!

People have been so so kind. Friends and family have walked dogs, cooked me meals, bought me endless cups of tea, taken me out to dinner, bought me thoughtful gifts and sat with me during my bedside vigil. The many comforting comments on Blogger and Facebook have lifted my spirits and kept me going when I thought I couldn't.  I keep telling Jack that there are people rooting for him all over the world and that makes him a very special boy.

image from here

My darling girl has been coping on her own again but I did manage to get her through for the weekend and we took time out and went to see Breaking Dawn. We loved it. Spending time with Holly is some of the best therapy ever and it's free! And today we finally got all her University applications in, so that's another weight off my mind. 

I can't believe that November is nearly over. The last time I looked up, it was September and driving home today, it was snowing and the sky was dark. It reflected my feelings perfectly.

So now, I am curled up on the sofa, wrapped in a duvet, watching funny movies that a friend dropped by with tonight. Another kindness that brought me to tears.

I will leave you with a song that I sing to Jack all the time and one which he recognises. Hope you like it.

What's it all about?

We are home but it has been anything but normal.

Jack hasn't been able to go back to school because he is still not strong enough and also because the school need training in using suction and giving rectal Peraldehyde for seizures. On top of that, the school are fighting to get nursing care for Jack so I think it is unlikely he will get back to school until then.

Holly is really struggling with the trauma over the last 5 weeks and I think she has a touch of depression. I am trying to get her to bed early, eat a bit healthier and take multivitamins. If that doesn't work then I need to take her to the doctor.

an apple a day, keeps the doctor away  (source)

I was only home 8 hours and I had to give Jack both Midazolam and Peraldehyde to stop clusters of seizures. It was 1.40am when he finally went limp and I couldn't stop crying. There is only so much one person can take and having to do that for the first time was one of those moments. I know it's not the worst thing I have had to do but it's so invasive and I hate it.

Jack in HDU, first day off the ventilator

I seem to cry at the drop of a hat at the moment, just can't keep it in and found myself breaking down on Monday morning when it took me an hour to get through to the Dr's surgery, after being cut off and having to listen to an annoying robotic voice telling me I was number 6 in the queue. When I finally got through to the pharmacist, I just fell apart and could hardly speak through my tears but finally managed to blurt out what I needed to tell her.

The school auxiliarys are coming into my house to give me a bit of a break but I can't leave them with Jack because they haven't had the training. I am also training up a lady who is now coming in to help get Jack up in the morning and put him to bed at night. The Crossroads carer, Marion, came in on Tuesday but again I was not able to leave her because she hasn't had training and just as well I didn't because Jack decided to put us through our paces again and he had to have both rescue meds again.

Poor Marion was thrown in the deep end just like me and it hasn't let up AT ALL!

Wednesday he was so agitated he only slept 4 hours and then started fitting at 5am so required both rescue meds again. I had been up most of the night with him so by then I was completely exhausted and so weepy I was turning into a gibbering wreck. Thankfully he was due in respite, where he was able to go because some of the carers on duty were given their training.

They had the same problem and he again only slept at 5am as he required rescue meds. They called a doctor at 2.20am and they suggested pain killers to calm him which didn't work. The doctor came back at 9.30am and he wasn't happy with Jack's heart rate which was very high and his oxygen levels weren't great either so they called an ambulance, which took him to the children's ward. I arrived 5 minutes before the ambulance and once again, I broke down.

Jack's teddy in ICU. He looks like I feel lol

So now we are back where we started 6 weeks ago, coping with the side effects of a new medicine. Hopefully it wont have such dire consequences as last time cos to be honest, I don't know how much more, we as a family, can take.

I am truly truly running on empty.

One Step Closer

Jack was discharged from hospital on Wednesday and we are now at Rachel House the children's hospice. We are here til Saturday and then we get to go home! WOO HOO!

photo from here

It's not til I got here that I realised how bloody exhausted I am. Holly and I managed a wee walk around town yesterday and that was it as I was sooooo tired.

I will be so glad to get home, back to my own bed and a tiny bit of normality cos lets face it, nothing about my life is normal really! LOL

Holly and I are going to Stirling today for a wee bit of shopping. A bit of retail therapy does a person the world of good, don't you think?

Hope all is well in your worlds my little gigglers.