Monday, February 25, 2013

Home Sweet Home

When I last posted I had been given my discharge papers and achieved Freedom.  After a tour of the hospital and a quick elevator ride I could see the light at the end of the tunnel, there it was…the exit in all its glory.  Never before has the air in Albany smelled better, it was a beautiful sunny day in the mid forties which for February is a rare treat.  Luckily I got out of the building before Joyce got the van from the parking garage so I was able to sit there in the wheelchair and enjoy some sun and somewhat fresh air.  It was so nice to be out of that building, I was there for a week and was about to go stir-crazy.  Don’t worry, I was still under hospital supervision they didn’t just push me outside and leave me, my nurses assistant was there to make sure I didn’t roll down the sidewalk or get in the wrong vehicle.

Before I go any further I should mention that these new headaches are different from the Chiari headaches.  These headaches seem to be more motion and position sensitive, as in each step or wrong turn of the neck can and usually does result in a hot shot of pain that can last from a few seconds to a few hours.  These new headaches are much more intense than any description I can come up with, but I’ll try…They feel like my brain is being constricted while at the same time it is trying to explode out of the top of my skull, out of my ears, and through my eyes.

Anyone that lives in Albany or has to travel through it knows that Albany always vies for the title of the worst kept roads.  It must have more potholes per square mile than any other city in the state.  I’m not just talking about the side streets; I’m taking about New Scotland Avenue, which is the main entry road to get to the two major hospitals.  Albany should be ashamed of it self for presenting hospital visitors with such a poorly maintained road.  I know you are thinking, “Shut up about the roads”, but I had to mention them because those potholes did their best to make my life miserable on the trip home.  Every jolt from those potholes resulted in devastating pain.

We live about an hour from Albany and when we finally got on the Interstate my eyes were becoming sensitive to the bright sunlight…ugh!  Every bump and dip in the road was kind enough to make my head and neck cry out in pain.  Sitting for long periods of time also caused pain so that trip was like a tri-fecta of pain infliction.  That was the worst car ride of my entire life and I pray I never have to experience anything like it again.  I was so happy to see our house as it came into view; the joy was almost overwhelming.  Once I got settled in at the house with the help of my wonderful and patient wife I spent the rest of Friday and Saturday sleeping as much as I could.  I may have been in pain and exhausted from the ride but I was where I wanted to be, home sweet home!

I will reveal my zipper in the next post so be prepared.

Friday, February 22, 2013

Story Time

On we go…It’s finally Saturday and I’m breathing under my own power so they decide it’s time to send me to the M Unit and a room where they won’t be checking me every hour.  I don’t remember leaving the D Unit; I just remember the rude awakening I received when I woke up.  I was greeted by searing burning pain in my eyes from the extremely bright sunlight streaming in from all of the windows.  I was privileged enough to get a corner room, which would have been great if I wasn’t so sensitive to light.  Even with the shades closed I spent the next 2 or 3 days looking like this, and mumbling to myself like Gizmo “Bright Light, Bright Light”:


I also awoke to the realization that I had a roommate.  Normally it wouldn’t be such a bad thing, but he was a pastor of some sort and I’m pretty sure his entire congregation was visiting him.  My nurse finally put them out via the 2 visitor limit rule and told him to go down to the waiting room with them…ahhh the sound of silence.  I remember my visitors coming and going over the weekend but that was about all I remember.  I didn’t have much to say so I was terrible company.  I think it was Monday when my roommate moved out and I had the entire room to myself…the quiet was wonderful.

My original, naïve, never been in the hospital plan was to be out of the hospital within 3 days, after all they said 3-5 days, so I was all set to be released at some point Monday.  Turns out I’m not as tough as I thought, and Chiari and nausea had other plans.  My doctor also reminded me that I just had surgery that is very difficult to recover from.

So Monday turned into Tuesday…more pain, more nausea…Tuesday involved being transported to the CT machine to make sure everything is in it’s place…Tuesday turned into Wednesday…more pain, more nausea, oh no now a fever!  Thursday comes and the nausea has subsided and I got my pain level down to a 5.  I haven’t been at a 5 in forever, it was glorious.  Of course the relief didn’t last long, I over did it and shot back up to a 10…grrrr!  All I had to do was keep my food down and I could get out of there Friday!  Thursday also meant the arrival of another roommate…ugh!  He was about 90 years old and had the grossest cough ever.  Each time he coughed my stomach turned and my head pounded.  I did a lot of praying that I wouldn’t puke each time he coughed, which was about every half hour.  All of his visitors had to talk on their cell phones and were loud in all conversations, I never met any of them but I hated them anyway.  They seemed to quiet down after I told the nurse I was about to go after all of them with my IV pole.  So it’s Thursday night and the pain is brutal, they pump me full of pain med’s and during one of my vital check’s it looks like I’m getting another fever.  This resulted in spending about an hour with cold packs in my armpits and on my head.  Close call, but the fever stayed below 100 so I still had a chance of getting out.  It’s finally Friday, and the pain was way above 10 but I didn’t care I wanted to go home.  After all I can be in pain at home just as well as I can at the hospital.  At long last the nurse came in with my discharge papers…sweet!  I listened to her instructions and bam; got hit with a wave of nausea.  Another close call but I got through it and got my wheelchair ride down to the exit…FREEDOM!!!

The next post will deal with the special hell that was getting home!

Wednesday, February 20, 2013

I'm Back!


First of all I want to thank everyone for the wonderful comments, thoughts, prayers and help you have all given us during this adventure.  I am feeling stronger everyday.  I’m not pain free but I get a brief respite a few hours each day.  Best of all the constant numbness and tingling in left arm and leg are gone…Take that Chiari!

Wow, where to start?  I guess I’ll start with the fact that I never got the chance to cruise the hallways of the hospital in a wheelchair harassing people…bummer.  As a matter of fact I got reprimanded for going past the double doors of my wing one day during a walk.  Apparently there are a lot of confused people on the neuroscience unit and they don’t want them getting lost.

The big day was finally here, we left the house at 4:00am so we could see my parents before the 5:30am check-in.  Shockingly enough check-in started with having to take a freakin’ number and sit and wait to be called.  We waited then signed our lives away and off we went to pre-op care, where they were nice enough to run some happy juice through my IV then covered me in pre-warmed blankets, I loved those blankets.  Things get blurry after that, I remember rolling through the halls and praying they didn’t break my feet since the stretcher isn’t made for people as tall as I am and my feet were hanging over the edge.  I remember how the OR looked brand new…if it was 1970.  To be fair they are constructing a dedicated OR tower so future patients will get to use the new digs.  They asked me what kind of music I wanted to listen too, so I asked for something fast, hard, and loud.  The last thing I remember is hearing Thunderstruck by AC/DC and then waking up in the ICU and being moved to the PACU, or maybe I woke up in the PACU and then moved to the ICU.  I have no idea where I was Friday into Saturday morning, just that it was on the 5th floor of the D wing and there were at least 3 others in there with me and they kept the room wonderfully dark.  One of my room mates was a teenager I’ll call him “Skippy”.  Skippy needed his ass kicked, all he did was yell at the nurses and his mommy, then mommy would yell at the nurses.  I offered up a “shut-up” as loud as I could but it didn’t work, for all I know the words never came out.  The only thing that I remember clearly was managing to rip out one of my IV’s and being completely covered in blood.  The rest of Friday sucked.  They tried to sit me up using the adjustable bed but the pain was too much to stand so they laid me back down.  Later they tried to sit me up using an assistant at each side…bad move; the pain was brutal and my legs and arms convulsed involuntarily.  That must have been one hell of a site; all 6’4” of me waving about like a jellyfish.  TMI ALERT…I know you are all wondering why they kept torturing me by making me sit up, the simple answer is that my catheter was out and I wanted to prove I could go by myself.  The stakes were high because if I didn’t go they would straight catheter me every time I had a full bladder…yup, I lost that battle.  It taught me one valuable lesson though, and that is that you don’t give a damn about dignity when your bladder is full and you can’t complete the mission on your own.  The rest of my night was filled with nausea and my vitals being checked every hour, sleep just wasn’t meant to be.

Stay tuned I have more to share but I need to rest.  With luck I’ll have another installment tomorrow.

Wednesday, February 13, 2013

Stuck in hospital

I told you all recovery sucks, I just didn't realize how much it would suck. Can't keep anything down and can't move without my head exploding. Luckily I am in a great hospital room because it is the brightest one in the hospital and my eyes are extremely sensitive to the damn light. If I can keep food down for the next 8 - 12 hours, they will let me go home.

I will let ya'll know when I get out.

Monday, February 11, 2013

I am alive

Just wanted to let everybody know I survived the surgery. The surgery was the easy part, the recovery sucks. I will have more details for everyone once I get out of the hospital. That's all I got right now.

Thursday, February 7, 2013

It's On

7:30am is when my zipper will be installed…Sweet!

I guess the [insert any derogatory term here] staff at Albany Med decided to get one last parting shot at me.  I ended up having to call them to find out what time my decompression surgery is scheduled for.  There must be a secret file on me that the support staff can see and they know I called them monkeys so they are out to make me crazy.

Anyway…I’m glad that today was a busy day at work.  Being busy helped keep my mind off the impending surgery and kept my nerves in check.  I’ve never been a patient before so the unknown is what is getting to me.  I may get the occasional case of the nerves, but then I remind myself that after I heal I will be able to lead a normal life again – although some will argue that using the word ‘normal’ in reference to myself is an oxymoron. 

A few things I’m looking forward to:

-          A good nap while under anesthesia
-          Making people wait on me
-          Really good pain meds
-          Cruising the halls of Albany Med in a wheelchair and yelling at people to get out of my way
-          Telling people that I had experimental surgery and the scar is where they implanted a GPS so I’ll never get lost
-          Going to the store and when people talk to me pretending I can’t hear them and just point to my scar
-          Bending over without my head exploding
-          Laughing without pain
-          Running around and playing with the kids
-          Hugging Joyce without loosing my balance

Tomorrow is the big day, as soon as I can post an update I will.  Thank you to everyone for your love and support.

Tuesday, February 5, 2013

The Journey Continues

I wanted to write about this last night but I was in no shape or mood to even consider using the computer.  Chiari was being especially bratty yesterday.

Remember those Careerbuilder.com monkeys I talked about in the previous post?  Apparently they also run the hospital IT department.  Yesterday at 11:15am was my scheduled Pre-Op Screening appointment at Albany Med.  Figuring it may take a few minutes to get through Central Registration I arrived at 11:00am.  Thus began an odyssey of hurry up and wait.  It started with waiting at least 5 minutes while the woman at the “Stop Here” desk was on the phone trying to figure out why the patient in front of me wasn’t in the system.  Apparently the other two women in the same area as her aren’t allowed to help since they were busy doing nothing but looking at us with that “sucks to be you” look.  After 5 aggravating minutes it was my turn to check-in and…wait for it…get a number so I could go sit and wait to be called to the next available registration desk.  I got number 2; I was feeling pretty good about getting this low number until I saw that they were still on number 46.  I began praying that there were only 50 numbers in the pile, I mean after all how long could it take to check-in 6 people.  Perhaps I should take a moment here and let you all know that I don’t handle waiting very well, waiting results in me having great difficulty in keeping my temper and mouth in check.   It took 38 minutes to check in 6 people at 4 registration desks.  It was finally my turn, that’s when they decided to tell me that they were going live with a new system and they were having “issues”.  How about a sign at the “Stop Here” desk telling us what’s going on…damn monkeys!  I slogged my way through the slow check in process and proceeded to my next stop.

It’s almost noon when I arrive at the Pre-Op Screening check-in, which is across the hall from Central Registration.  I am greeted by a very nice woman, at least I thought she was nice until she handed me another freakin’ number and told me to go sit and wait until my number is called.  Oh for Christ’s sake!  This time I only had to wait for about 20 minutes; at least they had a television to keep us all amused.  It takes another 8 minutes to check-in, after signing a ton of forms I was sent back to sit in the waiting area and fill out some medical history paperwork and wait again.  At least this check-in area had a sign apologizing for the long wait, and informing us that they were using a new system.

It is now 12:30pm and I still haven’t been seen for my “appointment”.  For the next half hour I watched TV and looked around at the other inhabitants of the “fish bowl” waiting area.  Why refer to it as a “fish bowl”?  Because it’s a glass enclosed area just in from the main entrance so everyone that walks by can see us.  I would randomly wave to people when they made the mistake of making eye contact with me.  To further amuse myself; as I looked at each of the other inhabitants of the “fish bowl” I tried to figure out what their medical issue was.  I went with heart condition for the two guys across from me because they both seemed even more uptight then I was.  I went with cancer for the old lady next to me for the simple reason that she called everyone she knew to tell them she was being operated on for her cancer on Wednesday.  For the dude in the corner I went with neurological disorder since he was about my age and was using a cane.  For the lady on my right I went with stomach problems since she kept holding her stomach.  I’ll keep the rest of my amateur diagnosis to myself since they weren’t exactly family friendly.

At 1:15pm I finally heard the sweet sound of the nurse calling my name.  I wasn’t exactly shocked when the nurse told me that my blood pressure was a bit high…My exact response was “Jeesh I wonder why”.   I was then told to wait in the exam room for the Nurse Practitioner to see me.  Don’t worry I didn’t snap, I was cool with this wait.  I then got poked, prodded, questioned, told what I could and couldn’t do the next few days and was out of there by 2:15.

So thanks to the IT monkeys and their slow, barely working new system my appointment lasted 3 hours and 15 minutes.

Albany Med wasn’t done torturing me yet.  I still had to get my pain prescription refilled.  Time to call my primary care doctor in Albany Med’s Internal Medicine Group for the refill.  I was on hold from the time I left the Albany Med parking garage all the way to Exit 25 on the Thruway.  For those not familiar with the area, it takes about 20 minutes depending on traffic.  Don’t worry, my car has bluetooth, I wasn’t “on the phone”.  Since it was late in the afternoon it must have been too difficult for them to enter the prescription into the computer and send it along to the pharmacy because when Joyce went to pick it up it hadn’t been called in yet. 

Thank God I know the medical staff at Albany Med is awesome because the support staff, well let’s just say they aren’t so awesome…Freakin’ Monkeys!

3 days to go!!!!

Sunday, February 3, 2013

Wash and Wear

Today was the big day.  Time to have some fun with the upcoming surgery.  I let the kids give me a buzz cut.  Not only do I look like a new man, I feel like one today.  Yesterday was brutal.  I was able to watch my wife and daughter take their Tae Kwon Do belt tests - they both did great and advanced a level - but that was it.  I spent the rest of the day on the couch with my eye's closed.  I couldn't sleep, all I could do was lie there with my eye's closed and listen to the television. It sure made Pawn Stars more interesting.  Today was sooooo much better, the headaches were little baby ones.  And now my hair is wash and wear, no more brush and no more gel.. 

On to the hair cut.  Let's see how I looked with all of my hair, I didn't even bother to comb it for these:



Time to start cutting, girls first:







Now it's our son's turn:



Look mom a mohawk





Moving right along:




TaDa!