The one week hangover: Arnold's legacy

One week ago today Arnold was surgically removed from my life.  The ride since then has been hellish.

Day 1: Pre-op
What a machine UCSF is.  Everything is so organized and together.  They run like clockwork and take such good care of everyone, patients and loved ones.

We breezed into the city and self-parked.  Spent about 1 minute in admissions where they handed me a folder and sent me to the surgical waiting area.  We checked into the waiting room where they are very strict no food no drink in those areas for all of us that are fasting.  They took down Greg's name and number so they knew how to get ahold of him for updates.

My Big Brother, Kent, was there to meet us and we just visited in the waiting room until they called us up.

Then like little drones, we were called and directed to the "M" elevators, up to the 4th floor into the only room open.  We were given a bed number and escorted there by a staff member.  I received a large yellow bag for all of my belongings, Greg ended up just taking all of that with him.
Then, all of the people started coming by:

1. Dr. G - Dr. M's resident
2. Another doctor that was Dr. L's resident
3. The anesthesiologist
4. The anesthesiologist's assisant
5. Dr. M - neurosurgeon
6. Dr. L - ENT/otolaryngologise
7. Nurse S, head of the OR nursing staff
8. Nurse E, head of the neurology surgical nursing staff
9. Nurse J, the nurse taking care of me in the OR

I know there were more, I can't remember who they were.  They all asked me about the same questions, checked that I was marked in the right place and were just nice, professional and quick.  Soon it was past 8:30, Dr M has forgotten to do something in the computer so we had to wait for him to complete that before they wheeled me in.  Greg watched me get wheeled into the OR and then that was is.

Kent left a little before 8:30 as he had a meeting.  Yes, life moves on even when I am in surgery.  I have to take this moment to thank my big brother for his assistance on this journey.  I have mentioned before he was the catalyst that made me seek out the doctors at UCSF.  Having him there to help us navigate parking and where to go has made this easier on Greg and for me.  Because he is an employee of the medical center, he was able to get us concierge status, which just meant a few extra kudos for us and our stay.  Most importantly, though, he was there to see me into surgery and when I got out.  He checked in on Greg and helped keep him occupied.  He has been a big support and I am so thankful for all that he has done for us.

Once in the OR, I really tried to look around and see what was going on.  Honestly, it kind of reminded me of the room of requirements in Harry Potter.  There were just machines and contraptions all over the place.  It was a big room and had big lights, then lights out.

Day 1: Surgery
I slept.

Day 1: Post-op/Neuro ICU
Next thing I knew i was all bundled up waking up with a massive headache and a very dry mouth.  Greg was there, Kent was there, I asked for pain meds.
I tried opening my eyes and they bounced all over the place like a pachinko machine! I felt miserable and wanted to sleep.
I believe that first night there were a lot of people around.  My other brother, Kevin, came by for awhile.  The doctors came, various nurses, etc.  I hardly moved and just wanted to sleep. My mouth was dry so Greg was able to dab it with a sponge.  I hadn't a prayer of taking a drink.

Day 2: Neuro ICU --> Neurology ward
The Neuro ICU is not a restful place.  There seemed to be people around all of the time and I was constantly checked.  The narcotics were making me groggy but I was not sleeping very well.  I did not feel like I ever really went all the way to sleep.

This first day I'm fairly vague about.  Lots of doctors, residents, etc. came by.  I tried to sleep alot.  Overnight I had graduated from sponges to ice chips to actual water.  They were trying to get me to take pills as their effect would last longer.  Interestingly enough through all of this, they did not actively manage my pain for me.  I had to ask for pain killers when I needed them; they did not come give them to me on a schedule or anything like that.
I basically spent al day in the Neuro ICU awaiting a room.  Because of Kent, admissions was holding out for a private room for me!  It was completely worth it.

I had a post-op MRI sometime that morning.  They wheeled me out with everything attached.  They warned me of bumps at which I would clench my teeth in hopes that my head would not jiggle too much.  They had to remove all the monitoring pieces on my chest and replaced them with MRI specific monitoring pads.  It seemed like quite a process and the whole time all I could do was just lay there wishing I could feel better.  Sometime later Dr. M came by declaring the MRI was clear!

At one point the Physical Therapist came in and got me up and I walked into the hall, then went back to bed.  It was hard, there was nausea and nothing seemed to want to sit still for me.  But, I did it, that's what counted.

Mom, Dad, Kevin and the kids made it for a visit sometime too.  They let them come into the Neuro ICU after checking their temperature.  I was so glad to see them, for what little I could look at them.  They did not stay too long, I was not very good company.

Soon after I was moved to the neurology ward of the hospital into my own room.  All the monitors were removed from me, but I still had tubes coming and going in every direction.   I think I can sum up about how many things they had all over me in the ICU:

1. IV on the right
2. IV on the left
3. Instantaneous blood pressure gauge
4. lumbar drain
5. foley catheter
6. at least four sticker type monitors on my chest
7. both legs were wrapped in inflating pads that continuously filled with air and then released.  This was to keep the blood moving so I would not develop clots.

  <--That's the pump!

Day 3: The Lumbar Drain
As soon as I was moved to my regular room, the lumbar drain was turned on.  It actually is a little vacuum that slowly drains Cerebral Spinal Fluid (CSF) from my spine and thus from my head.  The rate of drain is directly related to where my head was.  So, I could not move my bed up and down, I could not lay down, was always a little tilted.  The purpose of this is to decrease the pressure in my head so everything could heal and seal up nicely.  The effect, though, was so discouraging.  I did not want to move because my head would throb and the pain shot up so fast when I tried to get up.  In general I felt miserable with little to no motivation to move or do anything.

Greg left in the evening to relieve my mom.  Both kids were getting sick and my Mom had a relapse of her cold.  While I would have loved to have Greg stay, I am very thankful that he had to go.  He would have been miserable staying in the hospital with me.  They check my vitals every 4 hours.  They are in just about every hour to check that the lumbar drain is at the correct range.  You never really rest while in the hospital, but with how I felt this day I was not sure how I was going to manage to get home on Sunday.

By the time Greg left, they decided to slow the drain from between 10 - 15 to 5 - 10, whatever that means.  It translated into me feeling a tiny bit better after a nap.  I even had visitors that evening, and was able to smile and converse.

 I can not believe how much CSF they siphoned out of me.  Was there anything left to hold up my brain?

Day 4: The Penthouse Suite
My head started throbbing more and more through the night.  By the morning, the new day nurse was determined to get me up and about.  I had to control the pain so I could move.  I was reluctant to try a new drug, but obviously just Tylenol was not enough.  Nurse E gave me Norco, which is acetaminophen and hydrocodone.  She made me get up and my head hurt.  So, she shot me full of demerol so I could manage to sit up for awhile.
The Norco did not affect me as heavily as the oxycodone, I was able to sleep a little, function ok and control the pain.  In general, this was a much better day than Friday.  I was able to sit up three times for about an hour.  I walked the corridors twice, once I made it around the nurses station and back.
Sometime at night, they removed the lumbar drain.  I then had to lay flat for 6 hours so it could heal.  I was thankful to be able to lay down, but then I still was not optimally comfortable.  By morning, my head was hurting again.

Day 5: Hospital --> HOME
My first time getting up this morning my head throbbed.  I had not had any pain meds for quite a while, so I popped a tylenol to see where that got me.  I managed to be up and nibble some breakfast.  I even took a walk before heading back to bed.

The occupational therapist came by and talked with us about getting along at home.  She had me practice using the walker and suggested she will send the Physical Therapist in to evaluate and possibly prescribe a walker for home.  She also suggested we would need some in home consultation in about a week.  All sounded fine to me as I was so wobbly and everything swims so badly when I stand up.

I settled in for a nap and eventually Greg headed out for lunch.  Dr. M came by sometime as I was waking up to see how I was doing.
Dr. M: "So what do you want to do?"
Me: "I wanna go HOME!"
Dr. M: "Ok, call your husband and get out of here!"

Dr. M also mentioned that he will be presenting my case as a small tumor that they operated on (mostly just radiate these small ones) with excellent facial nerve outcome.

So, a couple hour later, I was in the car on my way home.  Dr. M had cancelled any recommendations from the OT/PT and just sent us home.  The ride was long and bumpy, but somehow I made it through and into my own bed.  It was such a relief to be home!

Day 6: HOME
There is something inexplicable about being home versus in the hospital.  I by no means am back to normal, but I feel better and better ever so slowly.  Mom made me wintermelon soup and oystersauce noodles.  The soup was SO good and really hit the spot.  I think I drank that for three days.  My appetite has slowly returned and my vision is slowly getting better.  My left eye still likes to bounce around and I have a hard time focusing on anything to read.
In general I feel that I can make it through this.  I was not so sure in the hospital.  I felt so awful and did not feel like it was getting any better.  My best analogy, I feel like I have been hung over this whole time!