I just have to do this.
I have to see this.
I have to relive it.
I have to try to move on.
I have to make myself remember some events.
I have to let go.
I have to hold on.
I have to write it down so maybe it's not always going round
and round in my head.
I have to understand that there may be a reason
I'm so exhausted and down and numb and sensitive.
So, timeline, here we go.
Sunday
March 26th, 2006:
8:30 p.m., Nashville, TN: I am in Nashville for a 4 day conference when I receive a call from Wes telling me that my father was on his way to the hospital and that my mom thought he had had a stroke
9:00 p.m.: In my hotel room packing my suitcase to come home when I get a call from my brother telling me that Dad needed to be flown to another hospital if he was to have any kind of chance of survival
9:45-10:00: Leaving the hotel and driving West on 1-24 like a bat outta hell trying to get home as soon as I can--still don't know about where or when Dad will be flying out of Madisonville
10:15- 10:30 p.m.: Get another call from my brother telling me that Dad had just boarded the medivac helicopter and was on his way to University Hospital, Louisville. Mom and my brother are told he has suffered an ischemic stroke and if he makes it at all, he will most likely be severely brain-damaged.
Around midnight: Arrive in Mad'ville and go to Mom's. We are all in shock and don't know what to do. For some strange reason, we thought it best that I get a few hours of sleep before we drive to Louisville as I had already been on the road for 2 hours coming home and had been on the road 2 hours going to Nashville. Went home. Could not sleep.
Monday
March 27th, 2006:
2:45-3:00 a.m.: My brother calls. We all agree we must go now! We get on the road in 15 minutes time.
5:15 a.m.: Arrive in Louisville. Are taken to the Neuro Intensive Care floor and told we would have to wait to see Dad. Go to waiting room and wait for a call.
7:15 or so: We go back to see Dad (only 2 at a time). Can't remember who went first. Dad was still on the ventilator. The neuro team talks with my mom. They tell her they are running tests to try to determine what has happened to my dad.
2 or so p.m.:
Dad is taken off the ventilator. He recognizes us but can't speak. He looks confused--maybe a little frightened. We are all so relieved that he is breathing on his own and his vitals are good.
3-8:30 p.m.: We go back and visit each time we can. I sleep on the loveseat in the NIC floor though it smells like stinky feet, shit, and other assorted bodily smells. So tired I didn't care. Found out they had Dad on Dilantin, lasix, potassium. He had a seizure in the ER in Madisonville so they thought he should be on Dilantin.
8:30 or so: We leave the hospital and drive four blocks to a Holiday Inn that will become our home for the next 8 days. We have a few drinks, order some sandwiches, choose our beds (Mom and I choose a bed--2 queens in the room--Jason sets up the roll-out). We crash.
3 comments:
If you can, tell me what happened, Maggie.
Was it a stroke?
My father was never taken off the ventilator. He never opened his eyes, nor his mouth.
To this day, I don't know what happened to Dad, but let me tell you what did happen. We were told in Louisville by the Neuro Stroke team that he didn't have a stroke and he was not brain-damaged (that was Day 4), so they transferred his care to the general neuro team. He remained on the NIC floor for 9 days, and then he was sent to a Med/Surg floor as the doctors felt he no longer needed round-the-clock intensive care. During his entire stay in Louisville, we had to keep him restrained. He was confused and combative. He was talking out of his head, but he knew us and would address us by name. He would he say "Good morning, Sis" and then in the next breath he would start rambling about things I couldn't understand. He would see things on the wall and ceiling that weren't there; he would try to count but could only get to 5 and that was with great effort; he would talk about something he was designing for the room that needed to be done; he would ask for paper so he could draw his plan for us; he would get very frustrated because initially his speech was garbled and pretty much indecipherable unless you knew the answer (his middle name was Elmo and when one of the doctors asked him what his middle name was, he told them, but they couldn't understand it--I knew what he said). So, day by day he was less and less confused and his speech was improving. Mind you, we still have no diagnosis at this time and he is now nearing his third week in the hospital. Finally, before he was released to come back to the hospital here in Madisonville, the doctors said the only thing they could determine from the numerous tests they put Dad through was that he had had a series of silent strokes over the years--for perhaps ten years or more. There were lesions on the brain. They didn't seem to think those had anything to do with the night he was life-flighted there. They said he didn't have an ischemic stroke. They said he would need rehabilitation because he'd had a feeding tube and catheter for over 2 weeks (this was nearing week 3). We got home to our hospital and they took his restraints off. They said it was against their policy but they told us they would use an alarm attached to his gown. The first night here, he pulled out his feeding tube. The second night, he fell out of bed. By the third night, Easter Sunday, he had eaten very little, he couldn't go to the bathroom, he was frustrated that he couldn't walk, but he was improving. By Tuesday night, April 18th, he looked amazing. He looked younger and healthier than I had seen him look in years. He was scheduled to go home on Thursday, April 20th, but they had to put the catheter back in that morning. His doctor said it was a minor setback and they were going to let him come home with the cath. the next day. Mom left the hospital around 9 that evening so she could go home to get his room ready. They coded him at 10:18 that night and revived him briefly. They were going to take him to CCU but he coded again. Time of death--10:58. Cause of death, well, who knows? We sure don't. We asked for an autopsy, but the next day the pathologist called the funeral director and asked him to call my mom and ask her why she wanted an autopsy on an 82 year old man who died of sepsis. No one ever told us Dad was septic. All we wanted to do was know the cause of death, so Mom said--No, don't do the autopsy. Don't put his poor body through anything else.
His death certificate says:
Cause of death--Possible pulmonary embolism
His doctor has maintained all along that Dad did not die of sepsis, but that he's not sure of the exact cause of death.
So, we don't know what was wrong with him in those 4 weeks, but it was obviously something neurological. And we don't know if he died from an embolism, from aspiration, from a heart attack, or from sepsis.
It's all been such a nightmare. His care in the hospital was grossly inadequate. I have written the Joint Commission and expressed my concerns and listed specific incidents in which Dad's care was far from professional or caring.
I've kept a journal, but I just needed to come here and do my list thing and try to make myself remember the day to day.
For example, in the archives for this blog (an April or May entry perhaps), I had been listening to Lou Reed on the way to work--Perfect Day. My mind flashed back to a morning drive to the hospital. Dad was improving (we were still in Louisville), so we were actually feeling a little light-hearted and very hopeful that day. My brother was riding shotgun--Mom in the back. He and I started singing along with Lou.
"Oh it's such a perfect day
I'm glad I spent it with you
oh such a perfect day
you just keep me hanging on
you just keep me hanging on..."
To this day, when I am listening to that song, I am driving down Broadway and my Dad is alive and waiting to see us. For just a brief moment, I even believe it.
I'm so sorry, Maggie. It must be hard, not knowing. My uncle died last August, in his sleep, and while he had a myriad of health problems, no cause of death beyond natural causes was ever investigated and my aunt, feeling that he, being the intensely private person that he was in life would've felt violated by an autopsy in death never asked to have on performed.
Your description of his care as being inadequate scares the hell of me in the same way my mother's description of what occurs in the hospital where she still works (she can't afford to retire). She has said, emphatically: If anything should ever happen to me, never never never take me there.
Keep on keepin' on, Maggie. It sounds like you're on a mission.
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