I'm not telling this story for anyone else other then my family,
I feel I left a huge piece of this story out.. Cause I stopped blogging, so There are holes... And I need to fill them.. Get some kleenex and get ready for" a shit show" its a Byrne-ICU joke. or you can wash your arms... ( Never mind)
So Let's go back too..
Oct 28 2010
Thurs,
11:15 am hiltons bed side
I have been contemplating what hilton would want or need.....
1)Stop medical intervention
or
2) compete a tracheotomy
And start rehab.
Dr. Avery and I on this morning are having a private chat and we discuss all options as I listen to my sons breathing device rather then the doctor.. Yes I'm being cynical
Its funny the smallest sound can occupy your mind when the information you receive is no more beneficial then a zit on your ass... And you have had no more the 3 hours sleep per night in the last 18 days...
We are at a stage where the mom's and I are to choose for hilton...
penny and kellie said they would do what ever I believe was right for hilton...what hilton would want to do right now...
Stop medical intervention or
compete a tracheotomy
Hilton is only using the life support 30 % of the time, which means he is breathing on his own for the most part...
His fever is out of control, high / low? high / low.?.. And he has no real LOC.
As Dr. avery and I stand together inside bed #11/ standing inside each others comfort zone.
Avery says "we are in no rush to do anything", and "are you sure you understand everything" - he is clinic in his approach, well spoken, kind .... Cool glass's ... If I was a chick I would think he is hot ? ...
Avery continues: "Take your time,(sigh) hilton needs more time to heal"
He offers an interview with a woman named Alsha,( I think her name was Alsha), she worked on the 4th floor, in brain trauma rehab.... In hopes to give me hope that life continues after the ICU...
As the day unwinds waiting for the lady from th 4th floor, to show up ......
......this nurse I hate, leaves hilton in his own "shit" for 3 hours,
A little fed up,
cause this " temp nurse" asked me and my family to leave every 15 minutes to suction hilton or to trim his toe nails, she always wanted us to leave... WTF
"Let me tell you temp nurse, at this stage, I could suction hilt's secretion myself " ,,, and in 18 days in the world of "ICU" , I have never had to leave my son other then bum changes and leg dangling.. (Physical therapy)
And this nurse is not changing his bum...
Ok. this ass of a nurse just rubbed me the wrong way, she was part-time and all that.. and a bag of chips...
So 3 hours later, sick of shitty hilton ass,
I tap john on the shoulder ... ( And- Who- by the way - I swear was sent to take care of another patient just because he was too close to me...)
I said in a concerned voice "john his fever is every where and he smells..." John got up and muttered "I hate going up and over heads" as he marched toward bed #11 and just changed and cleaned hilton....
Thanks john...
---------------------------------
4 pm Alisha shows up and we march to the small meeting room at the end of the ICU.. This room is small with a little table, a coffee pot, microwave and a bar fridge... Bottle of vodka... A couple shots just before surgery... ;) just joking...no vodka..
I was siting with aunt kelly, kellie and Kat, as Alisha entered the room... We Listened to Hiltons worst and best case.. In rehab it all sounds like the shittest case...
As I looked around the room I see every ones face is white and I am not the only one that is fearful that hiltons road is not just rough... His quality of life is going to be destroyed.
She talked about a whole floor of angry sedated young men, who cant move, and are never going to leave.... Walk or shit on there own....
After she was done... She said get a second opinion from doctor kusmano.... ( Spelled that wrong)
So off to the charge nurse... And ask mike kusmano to be paged.... 60 minutes pass.... And again I go to john.... And off john goes pulling every string... To find the doctor.
We wait in the little room at the end of the ICU till 8:00pm. Kat had to pee and was tired and sad, and got a ride home with alex , she just needed to rest...
All the while kellie and kelly and I sat there... In walks a slim tall man with glasses, and a red binder.... He shook our hands and we introduced ourselves...
Dr . Kusmano. Said in his opinion
" Hilton has severe DAI and Said his right side is paralysed, and he will not speak, we would have to learn what his grunts and sounds would mean.
He would have a challenge to walk, if at all,
Hilton would have a challenge with all motor skills, may not be able to connect thoughts with action, ever...
Actually there was a chance he would never wake up...
He told us he would go through different phases, if he wakes up,
He may be institutionalised for ever......
He may never be able to live on his own
Wipe his ass, or even eat on his own...
He won't have a career, he may be get a volunteer job.. All within 2 , 4, 6 years...if ever..
All this added with a Marriott of other health challenges...
His brains left side would not talk to the right side...ever?
He showed us how he might walk....maybe?????
And he said like simone and the rest...
If he does not die when we stop life support , we can't and won't perform euthanasia......
" Fuck, shut up"...
all of this was a guess, because right now 18 days later hilton is only awake every hour for 5 minutes and can't obey any commands at all... No LOC-
.never mind swallow his own saliva ...
Or even clear his own throat, not because they were damaged, but because his brain was damaged... He can't do it because his brain can't connect the basics to life...
He was a vegetable... Fuck yes I said it , my boy was so fucked up,
its a sad day to see such a brilliant boy sitting in his own shit, doing nothing... Not even swallowing his own spit...
-----------------------------------
9:30pm
Sitting with kellie and kelly, I ask Denise, ( another great nurse, she had been with hilton for 7 out of the 20 days)...
can I see doctor perin? ( Messed up another name)
Dr. Perin. The best in his field was doing rounds at 7:30, Denise says she is friends with a lady named barb in his office.. And she could make sure this happens tomorrow...
Sweet...
Denise let me stay with hilton that night for an extra 10 minutes.... I played with his hair, rubbed his hands and told him how much I loved him.... Denise said she would get a hold of perin....
I go to the condo... Text penny. Speak with kelly and we are all on the same page...
Day 18 is done.. Fuck I'm tired scared and overloaded... My sons life is in my hands and I'm scared as shit...
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End of part One the missing blog
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