Helen's Hope

Helen's Hope: September 2014

Tuesday 23 September 2014

Life is short

Last week the youngest son of one of my best friends died. He was 21. Three and a half years ago he had an accident which resulted in him suffering a severe traumatic brain injury, just like H.  His mum and I met through an online support group for people with loved ones with disorders of consciousness. The paths that our children have taken during their lives have been so similar.  Even after their accidents they have followed similar paths. I have often turned to her for advice and reassurance about what is happening to H. Our professions are similar. Our outlooks are similar. We are a force to be reckoned with apparently. She is my partner in crime!!  

Last week, her boy was doing well, he was beginning to respond a little more, there were a few smiles. His mum captured some of it on her phone. Within 48 hours he was dead. He developed sepsis and eventually went into Intensive Care and all his organs shut down.  They are now waiting for coroner reports, possible inquests and are making funeral arrangements. 

It got me thinking. What would I do if this happened with H?  What would we do if she was to die?  Would she be buried or cremated? Where would her body or remains go?  These are discussions her father and I should have in the not to distant future. 

Life is very fragile. This has already been shown by the aftermath of the accident Helen had. It has been shown by people who have gone about their normal day and have suffered a catastrophic event that changed their life and the life of those around them.  It has been shown by this young man losing his life less than 24 hours after becoming ill.  

My latest tattoo says "Live for today as tomorrow is promised to no-one". It's very true. 

 





Wednesday 17 September 2014

Meeting with the people who control the money

Today we had a meeting with the Clinical Commissioning Group (CCG).  These are the people who have ultimate control over where H will stay; they control the money and if they say they won't pay for her to stay where she is then that's it, we would have to look for somewhere else for her to live.  We have been immensely lucky that we haven't yet had a formal review by the CCG in the year and three-quarters since H has been at Holy Cross.  They have asked for a couple of reviews from the hospital but haven't been in to visit yet. 

H is still on a rehabilitation package which again is almost unheard of!!  The normal period allocated for rehab seems to be between three and six months.  H has been on rehab since January 2013.  Her current period takes rehab funding to January 2015, two years after her arrival at HC.  Personally I think it's fair, she's had a good period of rehab.  They extended it again because of her big operation in July.

At HC they do not differentiate between patients on rehab and those on Continuing Healthcare (CHC).  They receive the same treatment and therapies, it's just that the money comes from a different pot.  Even though I know this, it is still worrying.  The person who came seemed impressed by the therapists who she spoke with.  She seemed happy that H's complex medical needs are being met at HC and probably could not be met elsewhere.  It's always a worry that she could end up in a general nursing home where they have no real in-depth knowledge of brain injuries, T1 diabetes, cranioplasties, fluctuating blood sugars, collagenous colitis, contractures, PEG feeding, splinting, shunts and numerous other issues that she has to deal with.  If by some miracle there was an equivalent residential home closer to Newbury that wanted young residents I would possibly think about moving her.  It's about H, not us.

I hate being at the mercy of others but that's the way it is now.