|“My son moved to McKinney Texas for a job teaching color guard at the high school there. He was 35 years old. He left Vermont at the end of May 2013 and drove to Texas with his new girlfriend of three months, they never lived together before they went to Texas.He was in Texas eight days when an ambulance was called to his residence and he was transported of the medical center of McKinney. His girlfriend told the EMS that it was an asthma attack.
I am not sure if his heart stopped in the ambulance or the E.R. from lack of oxygen but I was told they took forty minutes to resuscitate him.
As i write this I begin to feel my heart race, my throat close, my hands shake. It is so hard to explain what happened yet i live it everyday.
I will begin with some facts. My son was transported to the hospital on a Wednesday.I was not notified until Friday night around 6 p.m. I flew to Texas as soon as i could on Saturday.
When I arrived at the hospital I was met at the elevator by a chaplain who’s first words to me were my son’s girlfriend (now being called his fiancée) did everything she could by calling the ambulance… O.K. I want to see my son. I knew nothing of his status.
Then I walked to his room following the Chaplain, my son’s girlfriend, and the girlfriends brother.The four of us enter my son’s hospital room in ICU. As I see my son for the first time hooked up to machines the chaplain again tells me what a good job Marisa (the girlfriend) did by calling 911.
She says nothing. nothing at all.
Then I begin to ask a lot of questions and it dawns on me that they have already decided to take my son off life support. The brother whom I have never met before and did not know my son says “He will always be with us”.
I am in total shock.
I tell them no this will not happen and the Chaplain tells me i might not have a choice. I beg to speak to a doctor or a nurse and I ask the chaplain to leave.
I sit and hold my son’s hand.
I do not get to speak to a doctor until Monday.The prognosis is brain death.
I also speak to the hospital administrator who almost immediately starts asking me to take my son off life support. It seems i have ruined all their plans. the hospital administrator is worried about the bill and she mentions it frequently. And she wants me to give a exact time and day to remove my son from life support and asap.
I have to fight to declare myself my sons directive….As his live in girlfriend of eight days has assumed that role including giving her income to make my son not eligible for Texas Medicaid . The hospital does not even have my sons ss number. I inform them my son has Vermont Medicaid and they tell me no they do not accept that…and my son is considered indigent.
So before I arrived at the hospital the girlfriend and the hospital administrator have decided to end my son’s life. Because they decided he had no usable insurance. This in two days time. And she is already planning to leave Texas with my sons belongings. When I mention this to the hospital administrator she is surprised and tells me now she considers them “broke up”.
Now I know this story is getting a little long and I am trying to make it as comprehensible as possible but it is so crazy and the horror keeps growing. (even now) I am very confused and I reach out to the Brain Injury Association of America to try to educate myself on brain injury procedures, and my sons rights.
Every few hours the hospital administrator is asking me to set a time and date to remove the ventilator. This is torture. This is excruciating to keep asking me for a time a day to remove my son from life support.
To me my son is showing signs of life; he is reacting to pain. He has a gag reflexes. He is over breathing the ventilator. His heart goes faster when I speak. I am told the hearing is the last to go. And I wonder if he has heard everyone. Is he in pain? I want to bring him home to Vermont.
I am told this is not even a remote possibility
I ask for more tests. I need more information. they say they will do a blood flow test and a apnea test.
I ask the hospital administrator to walk me through the steps to take my son off life support while i am waiting for the blood flow test to come back. She does. We do this several times.
Now the blood flow test comes back and they tell me my son is brain dead. Devastation beyond what I ever thought possible.
I am in a daze when I mention to someone my son wanted to be an organ donor. Or did someone ask me? I’m not sure. but next thing that happens is I am told to wait for the Southwest Transplant Alliance to show up.
I thought what was going to happen is what I was told over and over… about the hospital administrator saying over and over about the ventilator being removed and she said my son would take guppy breaths and then pass on. This did not happen.
Now i am informed by Southwest Transplant Alliance that it takes 20 to 30 hours of testing for matches and when they were done that’s when my son’s life would end. WOW. I do not want this for my son but I am trying to honor his wishes and I am promised that Southwest Transplant Alliance would get me all my son medical records.
So after all the painful hours of being forced to decide the time and day of death ..they never mentioned procedures for organ donors …..it’s not even my choice to decide. After all the tormented hours of being forced to decide valuable time taken from me and my son for NOTHING.
I would like to sue the hospital administrator for not really knowing what she was talking about and forcing me to make a decision that is ultimately out of my control for not going through all the procedures when I asked over and over again.
So now here I am watching my poor son being worked on…not to help him but to harvest his organs. Hours go by each minute HELL.
I wonder if he feels pain. They say no but who knows really????
I am asked to leave the room a few times and i cringe at the thought of what invasive thing are they doing to him.
I feel so bad for my son he is like a rag doll at their disposal. It’s not dignified at all. I want them to stop. I leave the hospital throwing up.
I am giving updates by phone. I am told they have a heart recipient.
I can’t do this. but I feel it’s too late to stop… like a run-way train.
The next call I get I expect to be told what was going happen, I expected them to say “we are on our way to the operating room and I expected to get to see my son and tell him how proud I am of him and how brave he is.
Oh my god I never learn. This is not what happens.
I am whisked into a room with three Southwest Transplant Alliance workers (I notice there not smiling as much as before)and a doctor from the hospital and a nurse from the hospital. I am horrified .
This is the 11th day.
The doctor starts by telling me my sons prognosis has not changed he is almost defensive.
What is it?
“We have to tell you that we did the apnea test and your son breathed on his own for some time and we had to put the ventilator back in and we need you to sign another paper as there will be no heart transplant just his liver and kidneys.”
Oh Jeez please what is going on?
Don’t get me wrong I did not want any of this. NONE OF IT so what I am thinking is that my son was not brain dead not dead when they were testing him for organ donation.
Someone please give him pain medicine please stop touching him. The complete horror I feel makes me sick even today what did we put him through????? He did not deserve this he is a good person a giving, loving person and I failed him.
I sign the papers just to let my son have peace and now I will always have second thought on all my decisions.
I would like to sue Southwest Transplant Alliance and medical center of McKinney Tx for not following procedure by not doing a apnea test before declaration of brain death ……also Southwest Transplant Alliance lied to me ………they never produced the medical records they promised or any paper work at all including the paperwork I signed.
I never received copies even though I have requested them over and over I just get the form letters they send everyone with wishes of peace.”