Priviledged to have known him

GraceB
GraceB Member Posts: 1,598
edited 28. Jan 2017, 17:07 in Community Chit-chat archive
My nephew has been with his partner for over 3 years. She has 3 children from her previous relationship (girl, boy, girl) and they have a 14-month old daughter between them. Her son was born with a severe disability which has gradually become worse. He is now 9 years old. His condition has always been life limited. He has a long list of health issues, one of which is a collapsed lung due to severe scoliosis which can’t be operated on.

I heard last week that on Boxing Day young Jake had been admitted to firstly our local hospital with breathing difficulties, where he was put on life support and transferred to Evangelina Hospital in London. Last week he was “weaned off” a large part of life support but his mum was warned if he had to go back on the machine he’d never come off it.

Sadly, on Saturday Jake deteriorated and was put back onto full life support. He is being transferred back home tomorrow with the support of the Palliative Care Team. Once home his family will see him, spend a little time with him and then – and I have no idea how his Mum will do this – she will have to tell the Palliative Care Team to turn his life support off. They’ll then lose him.

I’ve been privileged to have met Jake 3 or 4 times. Each time, despite being in his wheelchair, blind and non-verbal he was always smiling and so content. He has been very much loved and treasured by not only his Mum and his sisters and other family members, but also by my nephew and his siblings and extended family.

Jake's Mum is such a brave lady who is naturally heart-broken. I feel honoured to know his Mum and so very privileged to have been fortunate to have known Jake. I am so proud of my nephew and I know his late Mum (my sister Sue) would have been immensely proud of him.

GraceB
Turn a negative into a positive!

Comments

  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    That's so heart breaking Grace, I'm so so sorry you and your Nephew and his wife. To go through that with an adult is bad enough but a young Child, well that is so desperately crushing.
    Jake sounds like he is an angel who must spread love and happiness where ever he is. I feel for any Mother and Father who has to make such a hard, heart breaking decision like that.
    I want to send you and your family (())'s at this hard time. :cry:
  • lindamay
    lindamay Member Posts: 112
    edited 30. Nov -1, 00:00
    Such a very sad situation. I don't know where his family find the strength to go through this but they will. And they will come out the other side. It may take a long while but they will.
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    This is heartbreaking news Grace. I offer my thoughts and prayers at this truly difficult time, for all the family. XX Aidan
    XX Aidan (still known as Bubbles).
  • barbara12
    barbara12 Member Posts: 21,091
    edited 30. Nov -1, 00:00
    So very very sad..I cannot imagine what his mum is going through and will go through..bless them..x
    Love
    Barbara
  • GraceB
    GraceB Member Posts: 1,598
    edited 30. Nov -1, 00:00
    Thank you all. There's been an adjustment to the plans. (And it's the Evangeline Hospital, part of Guys & St Thomas's Hospital - I got the name wrong in my original post!).

    The hospital aren't now moving Jake home until Friday. He'll be transferred on the support systems but, once home, these will be disconnected. Then only his sisters, Mum and Jamie (my nephew) will be with him. It's not known how long he'll survive once the machines are disconnected, but it's not expected to be any length of time.

    Jake's biological father and his family are spending time with him tomorrow (Wednesday). Our family are making final visits on Thursday. I'm going to support my nephews, niece and brother-in-law but cannot go into ICU to see him. Having had to make that heart-breaking decision last year when my late partner John's life support had to be turned off, I just cannot bear the thought of seeing another family member on an ventilator. I want to remember Jake the last time I saw him - with that lovely smile on his face.

    My late sister Sue (Jamie's Mum) would have been by Jamie's side for this, he was my god-son and I want to be there for him. He's said he fully understands I can't see Jake. Jamie needs a hug from his favourite Aunt and he'll be getting it! And he so deserves it. I'm proud to be his Aunt.

    GraceB
    Turn a negative into a positive!
  • barbara12
    barbara12 Member Posts: 21,091
    edited 30. Nov -1, 00:00
    Grace I do feel for you, stay strong ..I know you will after all you have been through..and I will say a little prayer on Friday.. for Jake his mum, you and the rest of his family ..(())xx
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    ((((( ))))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,241
    edited 30. Nov -1, 00:00
    And from me, too, Grace ((( ))) Some people don't require long lives to make huge differences to other people's. Well done, Jake.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • GraceB
    GraceB Member Posts: 1,598
    edited 30. Nov -1, 00:00
    We went to London fairly early this morning as timings had been tweaked again by the hospital and they moved Jake this afternoon.

    My nephew Jamie was in bits, naturally, as he looked on Jake as his own child. I hugged my Jamie and he clung onto me like he used to as a child. I'm pleased I went. I didn't see Jake as I just couldn't, but the rest of the family saw him briefly. Not seeing Jake was the right decision for me after last year.

    We were told that before we arrived, the nurses had moved Jake onto his Mum's lap for a cuddle and his breathing tube moved. Within 20 seconds alarms were sounding and he was struggling. That told us a lot.

    We came home on the train and Jamie travelled with us as Jake's wheelchair had to be taken home. Seeing that wheelchair empty was so hard for us all.

    Jake left London a little after 1pm and would have got home mid-late afternoon. His Mum, 1 Doctor and 2 nurses went with him in the ambulance. Once he was home and settled in his room the ventilator was disconnected. As planned the Dr, one of the nurses and the ambulance returned to London. The other nurse remained with Jake and his family.

    Jake died just after 8pm.

    Such a brave, inspiring and courageous child. He'll be very sadly missed by our family.

    Jake - R.I.P. It's been a privilege and an honour to have known you.

    GraceB
    Turn a negative into a positive!
  • lindamay
    lindamay Member Posts: 112
    edited 30. Nov -1, 00:00
    God bless you and all your family. I will pray Jake now has peace and that you will all have strength together as a family and will come through this very sad time.
  • GraceB
    GraceB Member Posts: 1,598
    edited 30. Nov -1, 00:00
    Thank you Lindamay.

    I heard today the machines were turned off just after 5pm, Jake died exactly 3 hours later. His Mum kept him at home last night and he was moved this morning, bless him. We are still waiting to hear if there'll be a post mortem and crossing our fingers they don't do this.

    GraceB
    Turn a negative into a positive!
  • dachshund
    dachshund Member Posts: 8,004
    edited 30. Nov -1, 00:00
    I'm so sorry Grace
    life can be so hard.
    take care
    joan xx
    take care
    joan xx
  • frogmorton
    frogmorton Member Posts: 26,666
    edited 30. Nov -1, 00:00
    Oh Grace.

    I just do not know what to say I am so desperately sorry for all of you.

    Such sad sad news, but wonderful to hear that the family were given such fantastic support by the staff enabling Jake to die at home with his Mum.

    Grace ((()))

    Love

    Toni xxx
    Love

    Toni xxx
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Grace (((())))

    Bryn
  • Turbogran
    Turbogran Member Posts: 1,989
    edited 30. Nov -1, 00:00
    Grace so sorry to hear this sending you and all the family plenty of (((( )))) Rip Jake xx
    Take care
    Carol xx
  • GraceB
    GraceB Member Posts: 1,598
    edited 30. Nov -1, 00:00
    Many thanks.

    Was told today Jake was collected by the undertakers late yesterday morning. His Mum wants a horse-drawn carriage from the house to the Church for the funeral. I suspect the sight of that will set everyone off on the day. We've not got a funeral date yet, but I think that'll be confirmed next week.

    It'll then be burial at our cemetery in Ashford. The same cemetery - and area of the cemetery - where my partner John was buried last year.

    I've told family I'll need transporting to/fro the funeral due to my TKR on Monday but whether or not I'll be able to get out of the car at the cemetery will be another matter. I'll have to see what I can manage on the day I think.

    I appreciate so very much all your kind support and messages. Thank you.

    GraceB
    Turn a negative into a positive!