Saturday, April 4, 2009

You won't believe it, but here it is.

I don't even know where to start.

Rehab was not working. Dad was getting worse.

Thursday, my sister-in-law was visiting him, and mentioned that the people taking care of him were not really following what they were supposed to be doing.

I mentioned this to his wife along with some other observations of my own. She called his doctor.
Finally, he was moved to a "close observation" floor of the rehab center.

Upon his arrival, the nurse there decided he needed to go to the ER right away. His breathing had become labored and "gargled".

Driving to the hospital, I thought this was just a quick backdoor way into getting him readmitted to the hospital.

When I walked into the ER, I walked into an episode of ER. There were 6 people standing around him, there was yelling, there were alarms, they were sticking things down his throat; my brother and Dad's wife were with him and looked scared to death.

He was gasping for air. His breathing--"labored" they called disturbing, I hope to someday be able to forget it.

They had him on oxygen. His chest was working too hard. His heartrate was too high. His oxygen levels not high enough.

His eyes were closed but he looked scared and kept reaching for his wife to cradle him.

They kept sticking suction down into his throat and pulling out ounces and ounces of something brown: HIS LUNCH.

He had aspirated his pureed beef and gravy.

We spent an intense three hours with him, watching him gasp for air. We kept pleading with the ER doctor, the techs, and the nurses to please do something. They kept telling us his numbers were fine and they didn't want to intubate him needlessly.

Finally after this three hours of torture, a doctor walks in, her face pale and sober... she walks to my Dad, turns and looks at us, and says "You know his numbers aren't good, right? He is experiencing respiratory failure."

We told her all the things everyone had been saying about not wanting to intubate. We didn't want him to be intubated because of all the damage the intubation had caused his throat, his swallowing, everything...

She said, at this point, that didn't matter...he was heading toward respiratory arrest.

She made calls. In come all the people again. One walks in with a crash cart. I took one last glance at my struggling father and just decided I couldn't be there one more second. I felt like I was standing in the middle of a war.

I walked to the waiting room, sat and shook and cried for a while, then decided I was ready to find out what had happened.

My family was around the corner, and let me know that he had been sedated and intubated, again.

I walked in the room, took one look at him, out and looking like a vegetable, and decided once again I couldn't take anymore images of him like this. I bolted.

We stood in the hallway, my family and I, and mused at how things just keep coming out of nowhere, things we could have never imagined or made up. We try to prepare ourselves for the worst, and then something unimaginable unfolds. You can't write this shit.

The next morning, I was still struggling with the images in my head of the scene in my Dad's hospital room. The phone rang (I have a phobia of ringing phones now, seriously) and it was my sister-in-law...

Dad had a ct scan that morning. There was spinal fluid around his brain. He was going into emergency surgery with his neurosurgeon to relieve the buildup.

And so again, I made my way to the hospital, sat in the same waiting room I sat in almost a month ago, this time with no hope or optimism, just feeling as though there was no other option but for things to go very, very wrong. Shock. Numbness. Fear. Complete and total despair.

The doctor came out afterwards and spoke to us...the operation had gone well, he expected everything to go just fine, but this is a major setback. Like starting completely over, only worse. This time, we don't know how much damage has been done from the spinal fluid buildup, from the intubation. Also, he has aspiration pneumonia.

Just because that wasn't dramatic enough, after the surgery, the doctor decided to verbally attack us as a group. He felt like we were questioning him too much, said that if we had some "issue" with him that we had better find us another doctor, that we had better "watch out", and basically threatened to remove himself if we didn't treat him with respect. This was all provoked only by Dad's wife asking if she needed to be in on a meeting between doctors (she was joking, and laughed when she said it). Obviously we are all under stress, but this took us completely off guard. We all felt it best to just apologize and kiss his ass, since he is our only hope for my Dad... but talk about knocking us on our asses. We stood around and just stared at each other for a minute..."Did that just happen?"

I feel like I'm drowning. I don't know what to do anymore. My friends don't know what to do anymore. My closest friend told me she was actually too scared to even say anything to me at this point. What's sad is that I understand it. I wouldn't know what to do either. Their lives go on, mine has stopped...and I just have to step back and wave goodbye. So I'm left completely isolated, alone in charge of three innocent children who cannot understand what is wrong with their mommy or their grandfather. I try to get through the day but I just want to sleep so I can stop seeing the horror play over and over in my head.

I call my Dad's work voicemail hundreds of times a day to hear his voice. I read his emails from just weeks ago. I look at his picture, I remind myself of the times that make me love him so much: riding on his shoulders as a child, having lunch every week with him, him coming to every soccer, baseball, and basketball game of my children, inviting us to dinner constantly so he could get a "grandkid fix", his special bond with each of my kids, his love of football and music, watching him play his guitar on stage, smiling and singing JUST 4 WEEKS AGO.

And then the image sneaks back in of him with a drain coming out of his head, a tube down his throat, flat on his back and seemingly's my worst nightmare, materializing EVERY SINGLE DAY. Over and over and over again in cruel and unusual ways.

People keep commenting about how "strong" I am, how God doesn't give you more you can handle, blah blah blah. Let me tell you, I go on because I have to...because the kids continue to need me, because the sun comes up every morning whether I want it to or not, because I can't die so I have no other choice but to breathe.

Said best by a close friend who just lost her husband to cancer:

"I know by saying, “I know the place you mind dwells at the moment,” means nothing. You want to slap people that try and give you a hug, roll your eyes at those who say “hey keep in touch love you” and most of all this is an odd time where you want to be left alone, but not really left alone. It’s an awkward time in life with no rhyme or reason as to why you are here and if there even is a reason to the madness that seems to be life (or a sick version of hell) at the moment.

There is a phrase that I have kept with me all these past two years – this, life as I know it, is just my greener side of hell at the moment. Hell God throws us way more sometimes that we can handle and , I just like I am sure you have, – have come to hate that phrase and just want to pummel the next person that tells you that or that this is some part of a greater plan. What great plan, puts a father in the hospital?

Hugs seem fake and tright. You’ll even wonder why those that were there in the begining no longer come around – or when they do it’s for five minutes when you need them for more like two hours.

You don’t trust your self with your emotions, one second you see a glimmer of hope – only to have it squashed 5 minutes, 5 hours or 5 days later. There is no easy fix. And I pray often to have God, or whatever higher power is up there, to give me some of your pain. I’ve had almost 2 years of dealing with raging emotions, because even when I was positive and the go-getter around people, I was that person that went home cried it all out so I could be strong when I needed to be. It SUCKED, it added a hardened layer to me that is the bitchier side. You sink down to the 13th depth of hell and sometimes just wish that you could go to bed and walk up with it all being a dream. No tumors, no hospitals, no fake people.

Often times you dread to think of what could be worse than this – because with everything you know what’s worse and you know you just don’t want to go there. You search the radio looking for something that pumps you up, only to find that everything pisses you off. You sometimes randomly go through your phone wanting to talk to someone, only to see that every name in your phone is just not the person you want to talk to – because that person is sitting in a hospital bed next to you."


  1. Wow, your friend's response rocks.

  2. Go see a hospital administrator. You should not have to put with a doctor's ego while trying to save your father's life. You have every right to ask questions. If the shoe was on the other foot, your doctor would be asking the questions just as you and your family are.

    Don't give up, these are your rights and you have to be strong to fight for them.

  3. Oh PLEASE do not be intimidated by this doctor. This is a stressful time. There is evidence that they were not on their "A Game" in closely observing your Dad's symptoms post surgery and correctly diagnosing them. They seemed like they were 'guessing'.I think that's why this doctor is edgy. How that doctor behaved is outrageous. Coming from a medical backround,I'm advising you to report him to the hospital administration. don't be afraid that he'll retaliate;he wouldn't dare.He needs to be reminded how to act. Be your Dad's advocate.I'll pray for all

  4. Love your friend's response. I'll tell you what I told J when she was going through all of her stuff. It fucking sucks. I hate that you are going through this. I'll buy you a dr. voodoo doll to stick some pins in if it makes you feel better. Call me anytime you want to hang or go out. My sis is here and I can leave at a moments notice. I love you!!!

  5. LOL Debbie-Amy already got me a voodoo doll! Hope to see you soon!

  6. You can also hire a health care advocate, who will basically hold your hand during all of this, go over medical treatment, lay it all out on the table for you. There is no reason for that doctor to treat you and your family like that. You have every right to question his actions- he works for you- not the other way around. Do not think he is the only one who can care for your dad. If you aren't happy with his care- Get someone else in there!

    As I mentioned previously, we've been through something similar with my own father. And with every step forward, there seemed to be two steps back. Also- another little bit of advice- check his chart. Keep an eye on his meds. Ask what each medication is for specifically. In my father's case, the night nurses were overdosing him to keep him quiet at night because he was agitated and kept them on their toes.

  7. This neurosurgeon is so highly specialized that he is one of only 25-50 in the entire country who can deal with Dad's type of tumor, and the only one in this area. Otherwise he would have been out the door the minute he opened his mouth.
    I will say that I think his attack was an indication that he realized he had screwed up, and he has been all over my Dad's care ever since.
    And honestly, it doesn't matter what I think anyways because Dad's wife is in charge of all of this...which can be frustrating, but she is the spouse.
    I have mentioned the medical advocate to her several times, maybe time to bring it up again.