Friday, January 22, 2010

We won the battle (graphic LONG post)

The past two weeks (of 4 weeks!) have blurred into one very long day. The days went so fast, even though they were spent in a desperate fight to stop my Dads suffering. We only wanted the truth. We wanted the Physicians to STOP dosing us with false hope. They were very manipulative. They thought they were pretty sly in avoiding questions. They THOUGHT we were like any other family that may not know any better, or that family that holds on unable to let go. They learned very quickly that they were wrong. We were not the quiet ones. We knew exactly what was going on. We fought to get Dad out of there to the very last day. Wednesday, we won this battle.

We FOUGHT the hospital to release my Dad to Hospice.... How sickening is that? We had to fight?!! Wednesday evening he was transferred. Immediate family gathered. Within 20 minutes Dad was situated in his room. Such a BEAUTIFUL place. Dad was dressed in clothing, no more hospital gown. Tape marks across his face that set his vent in place were cleaned. His hair was brushed. IV's and all tubes were removed. He looked like him again. Dad remained fully sedated the whole time, we didn't want him to die fighting in fear for his breath. Then, Hospice staff removed the ventilator and had us come to be with him.

Before we entered Dads room they told us he is very close to the end. My heart back tracked......I thought he would breathe for hours then end up unable to continue because he was too weak.....WHAT? I couldn't believe their words! He is very close to the end? How DARE that hospital fight us to keep him alive to this very day!! Minutes without a vent and he would pass!!?? They just told us TODAY he was getting better!! They told us he had a great chance!! LIES. LIES. LIES. I knew they were all lies, but now we were faced with the truth. My heart is angered by these last 2 weeks of lies and needless suffering!

We held his hand. We talked to him. It didn't seem real. It still doesn't, and I'm still emotionless. We hugged him tight as he struggled to breath. Within 10 minutes Dad took his last breath. Surrounded with love. Surrounded by his family. Away from the tubes. Away from that cold and deceitful hospital. Thats all that mattered in the end.

I feel I have to tell our story. I have to let others know how sickly wrong this whole thing turned out to be. Until the very last day, they refused to let their patient die. They didnt care if my Dad laid there as just a heart and lungs kept alive on a ventilator. They didnt care that his 160lb body turned to 140, then 120. They denied his muscle atrophy was a concern. They denied he was skin and bones. "The feeding tube would turn him around"......They just didnt want their patient to die. They have LIED to us for 2 weeks now. Saying his chances of recovery were very good. They tried guilt trips, asking why Dad would want heart surgery if he wasnt in it for "everything they've got" They said they see patients in worse condition recover all the time. LIES, all lies. What is worse that 30yrs of Diabetes eating you alive? Taking your eyesight, your kidneys, your ability to heal, your QUALITY OF LIFE? Dialysis alone, takes away quality of life. Dad has been able to do PD Dialysis at home for the last 7 years. 5 times a day. Now being faced with having to go back to Hemo dilaysis in a clinic for LIFE....that isnt quality of life. A feeding tube? A trach? Ohhhhhhh how they pushed us to switch from a ventilator to a Trach......One procedure turned into another. One "temporary" feeding tube went very wrong. And I know what they did. I know something went very wrong, and I know the doctors are all in cahoots covering that up. AS my Dad always said....."they will have their day"

Every day has felt like an eternity, yet the days went so fast. Each day brought more anguish as we tried to make a decision based on OUR reality....not their lies.
The past 2 weeks has been nothing but lies. Quintuple bypass, fine. My Dads heart was mended and strong. 2 and 3 days after surgery my Dad walked. He asked them to help him walk many times a day. His heart was mended, and all he wanted was to fight to get out of that hospital. He would have. I have no doubt in my mind. If only they listened from day 1. If only they didnt mess up that feeding tube!!

They SHOULD have checked his swallow as we requested. (after the heart attack dad had swallow issues) All they had to do was a simple GI consult and swallow test the days after his bypass to assure he wouldn't aspirate. They never did. So then came the Aspiration Pneumonia.....4 days back on a ventilator. He started to turn around. And then, the feeding tube placement.

I know what they did. I will not let this go. Their "simple" procedure went very wrong. I assume they punctured something when placing that "temporary" feeding tube. They let it go without care for almost 48 hours, even after I spoke with charge nurse that night about it. Because they KNEW Dad would die from that error alone. And so he sat with infection eating his abdominal cavity alive. While they made a plan to cover their asses.

Then came the 2nd abdominal surgery to save his life. We should have stopped there. But all they did, every day, was tell us he was getting better and they had a temporary fix for everything. IN denial, we trusted and believed them. This last week we knew this had to stop. If only THEY would stop.

Somehow, the cardiac surgeon became involved again once we told the nurses we had a Hospice plan. This wasn't anything cardiac related anymore. This was Pneumonia, a feeding tube, and abdominal surgery to fix THEIR error. This wasnt about Dads heart any longer. They fixed that, and ruined everything else.

The surgeon wanted to meet with us. All he wanted was HIS patient to survive. This was all about his reputation now, and covering up the hospitals lies. He told us how Dad could have a Trach put in for breathing long term. He was sure that would only be temporary as Dad regained strenght in rehab. That wasnt an option for us. But he pushed it. He told us how Dad would go to rehab for a "few weeks" and build his muscles again. We knew Dad already began to waste away after being bed ridden for 3 weeks. I think all I did for this last week was argue with doctors, asking them to STOP telling my mom how Dad "would likely" be okay. They just wouldnt stop.

The heart surgeon was rude and angry when we told him to STOP his lies, that we planned to move Dad to hospice. And, then, he did something that disgusts me to no end. He went to speak to the nurse about our Hospice plan. He ordered the nurse to stop sedation. Right then. While on a ventilator, most people remain sedated. Asshole doctor discontinued Dads sedation right then and there. He did it to SPITE US. So we would see Dad suffering. Dad woke up struggling within minutes. Struggling with a vent down his throat. With his arms restrained. In pain.

We FOUGHT to get new orders for sedation. Dad wasnt able to move to Hospice that day, sedation should have remained until he had somewhere to go!! We demanded they call that asshole doctor back to the floor to resume sedation orders. Minutes later he was back with a smirk on his face. I kid you not, that son of a bitch had a smirk on his face and told us "he must have misunderstood our plan" Thank GOD Sedation was turned back on, and Dad remained comfortable. It was this moment that we were in a panicked rush to end this craziness NOW. AS much as we tried to think we were the crazy ones making up all this chaos in our own was very clear now. They would do ANYTHING to keep my dad alive for their own need to cover their asses from their error. To keep the surgeons reputation.

Hospice day Wednesday came. Everyone knew our plan. A Physican needed to sign off to transfer my Dad to Hospice. The nurse decreased sedation so we could talk to my Dad. So we could tell him we wanted him off that vent. So we could tell him we would get him out of there. TO somewhere more comfortable. Anywhere but there. He knew he couldnt breath on his own. He didnt know any of the other gory details. He didnt know about the feeding tube or his body condition. He had NO IDEA of their medical error. We would never tell him that. We let him know that to honor his wishes, we would not continue this if it meant he was dependant on hemodialysis and a breathing machine. He agreed it was time for us to let go. We told him we love him. We told him we are sorry, endlessly. We told him how much we love him and how we cherished him as our father/husband. I told him I would take care of Mom. We hugged him. We held his hand tight. And then, they turned back up the sedation so he could remain comfortable and away from fear of what was coming. That was the last time for eternity, that my Dad looked into my eyes.

What happened next was the LAST straw for me playing nice. I couldn't argue nicely with these people anymore. The Hospitalist came to speak with us we thought, about discharging to Hospice. As soon as that doctor opened his mouth, I knew it was the same old deceitful conversation coming. He started with...."we need to talk about options" and it was then that I flew off the handle. I stood up and told him to stop. I told him we were there to talk about Hospice, and if he wasn't, then he needed to leave. He smirked at me and focused on my Mom. He continued talking about how my Dad was "getting better" and that he suddenly was showing progress. I raised my voice for him to STOP. I told him my Dad is going to Hospice, there aren't any options. I asked him three times to stop. Repeatedly, he talked right past me. I moved closer to him and demanded he leave. He refused to. So, I opened the door and SCREAMED for him to GET OUT. So, he did. Adrenaline is a funny thing. Messing with family that is heartbroken and being told lie after lie is asking for trouble. Covering up your medical error and keeping a person alive when they have no chance is SICK.

I walked out. I had to, or I would have tracked him down and spit in his face. Really, I would have. How dare he pull at my moms heart strings and tell my mother lies when my Dad lay there dependant on machines, with his skeletal bones showing through his sheets!!?? How DARE THEY?!! Somehow, I was sitting in the waiting room again. Trying to stop myself from hyperventilating in disgust and anger. I didn't even realize my sister was right outside Dad's room with my mom, trying to STOP this Doctor from asking my Dad personally what he wanted. This doctor wanted to speak with my Mom privately. We werent going to let that happen. They wouldnt stop!!! My sister was calm (a little loud) in telling this doctor my Dad would never even want to live on Hemodialysis. A feeding tube and a Tracheotomy was not an option. He told my sister to leave. So she did, and he still called security.

The waiting room doors flew open. When they closed, my sister lost it. I can't blame her. If anyone had gone through all this deceit watching their loved one suffer they would lose it just the same. My sister was screaming that this place was "SICK". They treat my Dad like a "lab rat" and everyone should get their family OUT of there. She was screaming that my Dad is a person...not just a heart and lungs to be kept alive in deceit. I told my uncle to get my mother OUT of there....away from that doctor. And so he did. My sister and I went outside to gain our composure. We knew my Dad could hear us fighting for him. Fighting to get him OUT of there. I'm sure he is proud. I know he is.

And so, here I am emotionless. I can't believe that on Dec 27th my Dad came out of heart surgery strong and ready to get home. Even being his prior condition...after that heart surgery he was strong!! He walked with every ounce of strength he had. Even after 30 years of Diabetes that had taken his kidneys. His eyes. His ability to walk well. He was strong. And then the hospital screwed up. There error killed my father. I'm emotionaless because I know we did the right thing. All I could have asked for was to get him out of there. To Hospice. To anywhere but there. Now he is without pain. Without illness. With Peace, and thats all that matters.


Tracy said...

Wow Kelly! I cannot believe how the hospital/doctors treated you and your family! I am so proud of YOU for standing up for him! I KNOW he is proud of you too!

I am so thankful he is now resting. No more feeding tube. No more dialysis. No more vent. No trach. No more diabetes. Just no more.

Just peace.

I am praying for you and your family as you get through these next weeks, months, years without your dad. I know he is glad you did the things you did. He would not have wanted to live like that.


Meri said...

There are no words Kelly. I cried through the whole post.

I know your Dad is proud of you. I'm so sorry you had to fight.
I'm so sorry.

Amy said...

Oh I'm sorry, SO sorry. Your family will continue to be in my prayers.. my heart hurts for you.....

Nicole said...

I really don't know what to say at this moment, I'm just soooo sorry that you and your family had to go through all of this. I really can't believe it!!

I'm sorry and you are strong, boy are you strong!!

Jill said...

I can't even begin to imagine the horror that your family has been put through for the last few weeks. We're continuing to pray for you daily and please know you're VERY loved! (((HUGS)))

Wendy said...

Man...reading this really yanked at my heart. I feel like I can remember each text, phone call, was a very heartbreaking experience to witness and I'm not even family!!!!!

(((HUGS))) I'm so sorry for all of this mess. I'm so sorry everything derailed.

Call anytime. I'm always here.

Cynthia said...

That hospital is rude and heartless, to say the least. This post made me sad, practically crying the whole time. Such a sad situation. I'm praying for you and your family.

Beth said...

I'm so sorry that this was such a difficult ordeal for your whole family, especially your dad. I'm sure he is smiling on you now and is proud of your standing up for him. Much love to you and your family!

Shamae said...

Wow Kelly. I'm so sorry. I really, really hope if you guys choose to pursue legal action, that this hospital will, as your dad would say, "they will have their day." I'm fuming reading about this. If you want, please keep us posted about this situation.

But I am so glad your dad is at peace. No more suffering. He is whole again. He has a wonderful family. You guys are great. We love you. Hugs.

phonelady said...

Wow Kelly I am so sorry for your loss of your dad and he is now at peace and rest. I hate hospitals for this very reason and they did this to my uncle as well . That hospital was wrong in how they treated you and your family . Good for you that you stood up to them . God bless you and your family .