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Tuesday 17 Oct 2017
Spring 2011 PDF Print E-mail
Written by Sally Fletcher   
Thursday, 10 March 2011 07:39
So much has happened this year already. Happily Ben is progressing well with his catheter and now it rarely even seems to pinch him when it goes through his spincter.  Later this month his carers are due to learn how to use it.  This is working so well that it seems un-necessary for mitrafanoff surgery.

We also finally found an antibitoic that keeps his urine infections away without giving him the severe diahorreah side affect that he was getting, it Nitrofurantoin, he takes 5mls at night and has not had an infection since - hurray!Laughing

We have had a reasonable winter compared to some old ones thanks again I am sure to "The Vest".

Late last year Ben had a circumcision, cystoscopy, urodynamics and ultrasound, things seem to have improved in our hospital and the doctors and nurses were listening to me - thank you.  They have also made a change so that when we go into hospital now they don't take all our meds away from us which is much better.

In January I went to the school of nursing to chat to some students from a parent's perspective, anyone who knows me will tell you I am no public speaker but they listened very graciously - thank you.

I pushed our PCT to reasses Ben's care package because we were not getting what we should have and continually struggling with days without cover and myself doing the rotas and all the organising without an end in sight.  Our care package is now being managed by a specialist company Invent Healthcare, a nurse co-ordinator is managing the package for me and taking care of all the staff issues, rotas etc.  It's in the early days but seems to be going well.

I know taking control of your care package yourself seems to be the trend and I do believe people should have the choice but ours is so intense and I don't want to be Ben's care manager, I want to be his Mum.  I don't do change well and knew that it would get worse before it got better, it did and it is.

I turned 37 yesterday, each birthday now I never fail to think of my 29th birthday, the first one Ben and I shared together, I was very tired, had the post natals but underneath that knew that I had everything I ever really wanted, after years of hard work and waiting I was on track to where I wanted to be.  Just a month later everything fell apart, our life was never going to be what I had planned.

Ok so that sounds like terrible self pity when Ben is the one who fights Canavans and I am really fortunate to have spent 8 years with our beautiful boy, so don't I have everything I ever really wanted anyway?  Life does go on, you just get on with it, but somewhere deep down I never stop mourning it, I wish I could.
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Last Updated on Friday, 11 March 2011 07:04