All was well two weekends ago when Gabriel & I spent my birthday at the hospital with Chris. We gave him a nice foot massage and left on a happy note – at least as best as I could.
But this past week I got an unexpected call from the hospital telling me that Chris had a large red rash area on his back, with blisters in various parts. The nurse who called me could not give me any definite explanation regarding what the potential cause may have been – just that to avoid potential infections Chris was put on antibiotics.
So today Gabriel and I made the trip again to check on Chris and all I can say is that I sure did not leave on a happy note. It is emotionally so devastating to see Chris like that – and as much as I write this over and over, I will never be able to convey the gush of emotions that always overtake me that first seconds when I see him at the hospital… sorrow for the loss of his life, pain at all that could have been for us as a family, for him as a father, for Chris as a human being with the potential of unfulfilled dreams ahead of him, the pain of missing my best friend and advocate ever…
Then I recompose myself and get back to my practical self and on I go to try to check his back… I can not even say how upset I was at finding him in completely soiled sheets – and again I get no answers as to what time he was checked on last. I had arrived at 14:30. This is such a horrible situation not only for Chris but for us as a family and the staff as it undermines the trust we have been trying to build regarding Chris care.
I cringe at the thought of how long he would have been left in that condition had I not showed up when I did… This is always the issue when you find undesirable unexpected situations like this… it may undermine the track record of good care while destroying the trust and comfort I may have started to sense. The blisters were all covered up so I could not see how bad they looked inside. There was a long red line running down on one side of his back. The injured area is large from top to bottom of his back but on the left side only.
I am not a doctor but it is obvious to me that it is NOT a rash as it was conveyed to me at first. I will hopefully get answers in the next coming days and will update accordingly.
Thanks for checking on us.
With love,
Koo
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Some upsetting news
Comments
Re: Some upsetting news
by
Diana Palumbo
on Tue 27 Jan 2009 05:15 AM GMT | Profile | Permanent Link
Sending my prayers for all of you as you continue the journey with your wonderful husband. My heart aches for Chris that those folks aren't doing a better job tending to his daily care. And with you for the anquish it brings you and Gabriel. Koo, keep up your strength and courage some how to stay in there and fight for Chris. It sounds like you're his only voice. Oh, how I wish his family was nearby to help you. I know the struggles caring for someone injured and my struggles aren't nearly like yours. I'll say some extra and specific prayers for you all. May God be with you all. Diana Palumbo P.s. thanks for posting the update. PLEASE keep us informed, if you can. I do have your situation in my heart and will worry and wonder about his condition.
Re: Some upsetting news
by
Koo Cho
on Tue 27 Jan 2009 09:25 PM GMT | Profile | Permanent Link
Quick update to say that there has been various exchanges between family and the hospital and an investigation has been initiated to try to find out how Chris got those marks and blisters in his back. It seems they are most likely result of some sort of “burning”. Hot water was ruled out although Chris had a shower that morning. The engineers confirmed the water does not go beyond 60oF (plus water burn would have been noticed by the staff showering him).
Another resident accidentally spilling hot drink was also ruled out as his T-shirt was dry and clean. Chris’ doctor hypothesizes “friction burn” worsened by sweat. I can’t buy into this theory because Chris does not have enough movement on his upper trunk to move himself enough to cause blisters to his skin, plus the long vertical red mark looks just very weird. Right now, it all seems a complete mystery and puzzle to everyone but I feel I can’t feel at ease unless there is an explanation for what caused this. I think not only we deserve to know what happened but also it is important to find out the cause as to ensure it does not repeat itself. Chris is on antibiotics and also pain killers (probably the reason why he was so sleepy when we visited him this weekend). Doctor and skin viability nurse feel Chris’ blisters should be healed within the week… but who knows… About the soiled sheets, unfortunate bad timing as staff was doing their rounds and going to eventually get to him. Koo Janury 27, 2009 Re: Re: Some upsetting news
by
Diana Palumbo
on Thu 29 Jan 2009 04:09 AM GMT | Profile | Permanent Link
Thanks for taking the time to respond, dear Koo. I can imagine how deeply disturbing this is for you so I especially thank you for finding the strength to continue to share your journey with us. With everything else you are managing, and of course for Chris's sake especially, you both deserve excellent care by those working in that field. I urge you to continue to investigate, someone should be held responsible. It makes me wonder if others have had similar problems.
Your path is a tough one right now, dear lady. I will pray for extra strength and wisdom for you as you navigate the difficult road your life is on right now. Re: Re: Some upsetting news
by
Diana Palumbo
on Sat 07 Feb 2009 03:22 PM GMT | Profile | Permanent Link
Still hoping and praying that Chris is feeling better. My heart is with you and your family, Koo.
Re: Chris is better
by
Koo Cho
on Sat 07 Feb 2009 05:18 PM GMT | Profile | Permanent Link
Thanks Diana for checking on us. I was told Chris' back is healed and he is back to his old smiling self. He has also been able to go back his wheelchair.
Although the hospital continues to investigate the cause of the blisters, it seems they have exhausted all possibilities and we may never find out for sure what exactly caused his injury on his back... Unfortunately I have not yet been able to make it back to the hospital due to unprecedented bad weather... Not only we may have more snow this weekend but I am also dealing with an injured back that took me to the local hospital this morning, and it seems I am coming down with a virus passed on this week from Gabriel - he missed school twice due to high fevers and I am swamped with work... Have I mentioned I am packing to move homes in 2 weeks time... Chris' mom will be here in 3 weeks so we are all looking forward to the visit. One day at time, I now know that tomorrow is always a better day. With love, Koo Re: Re: Chris is better
by
Ana Paula
on Sun 08 Feb 2009 03:05 AM GMT | Profile | Permanent Link
you are a strong and inspiring women! Good to know he is better now. love. Ana
Re: Re: Chris is better
by
Beth
on Tue 10 Feb 2009 03:07 AM GMT | Profile | Permanent Link
Dear Koo -- I am happy to hear about Chris' back healing and hope that you are also feeling better. You need to take care of yourself. Gabriel needs his mommy. I really don't know how you do it all. Are you moving back to Brazil or New York? I hope we can meet some day!
Love, Beth Re: Re: Re: Chris is better
by
Koo Cho
on Fri 13 Feb 2009 05:37 PM GMT | Profile | Permanent Link
Hi Beth, I am not quite moving that far yet, just moving from a flat to a bigger house, it's an intra London move.
Koo Re: Re: Chris is better
by
Diana Palumbo
on Tue 10 Feb 2009 04:09 PM GMT | Profile | Permanent Link
My heart goes out to you. It all sounds so darn difficult and frustrating. But it sounds like you have not been overwhelmed but continue to take the steps necessary for you and your family. That's admirable Koo. Not many have that gift to be able to cope in the darkest of times. I'll continue to add my voice to the many others praying for you and hope that God draws you near to Him, giving you comfort and peace.
Diana |
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