Wednesday, October 4, 2017

Surgery one step forward....

Apparently the surgery was a success. "Couldn't have gone better." At least that is what they are telling me.I don't know. I still have double vision. At least I do when I can see out of my right eye that is.
In order to help with healing, with the exception of one small section, they have sewed my eye shut. The appointment for removing the stitches is tomorrow so we will see how my vision is once I can see with both eyes again.

One of the side effects of having my eye stitched shut is that the stitches cause my my eye to weep all the time. With the weeping comes the crud that forms in the corners and along the bottom of the eye. if it doesn't form into crud, it runs down that side of my face. All in all it is not a lot of fun and I cant wait for the stitches to come out.

The other problem with all this weeping and crusting is having a goatee. All the crud and the goo ends up in there. I scrubbed and scrubbed trying to get keep it clean but it proved to be way to much work. So for the first time in close to 20 years, it is gone.
Don't know if I like the look.
Edie hasn't seen me yet.
The last time I took it off Maddie was very young and she fell on the ground laughing and pointing at me.

I am hoping for a more positive response this time.

We will see.

I’m starting with the man in the mirror
I’m asking him to change his ways
And no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself, and then make a change
(Man In The Mirror  Michael Jackson)

Thursday, September 28, 2017

Last Few weeks... Part 4 Friday Appointment

Here I go again.....
Tomorrow morning at 7:30 I go back into surgery. I have added them up and this will be my 4th surgery and 17th time I have been fully sedated since August 2015. I’d cry “UNCLE’ but I am so far beyond that it is ridiculous.

So there are two goals for tomorrow’s procedure. First is to put a custom plate in that should be able to hold my right eye in place. They found someone who was able to create the plate and now I just need to get it installed. I am assuming that since it is a “custom” plate that they are going to charge me a pretty penny for it and in my opinion should probably come with “free installation”. It won’t, but one can hope. The best that I can hope for is that it will fix the double vision and allow me go back to being able to see through both eyes at the same time. I haven't been able to do that since the accident.
Second is it roll my eyelash back out. According to the surgeon there was less than a two percent chance that after the first surgery scar tissue would cause one of my eyelids to roll back in on itself so that my eye lashes were in contact with my eyeball.
Less than two percent chance, huh… He had only seen it once before, huh…. He wasn’t worried about it, huh… Shouldn’t be an issue, huh…
Very rare…. RIIIGGGHHHTT..
Now he has seen it twice. It’s not a lot of fun let me tell you. My eye always aches and waters consistently. They will fix that also.

I am both excited and worried about this surgery. Excited to be able to use both eyes again. I am going on almost two months without being able to use my right eye. Two months with having daily pain in that eye even when I don't use it. I wear a black patch on it as often as possible and when the patch is not on that eye has to be closed. It makes doing most things difficult. I can see out of both eyes, but since they are not aligned it makes using both at the same time impossible.

I am worried about the “what if’s”. What if this doesn’t fix the problem. What if I do this and after surgery tomorrow I still am still seeing double. I have discussed with a couple of doctors my options if that does happen and I really don’t like any of them.

A lot riding on tomorrow.

I come around all broken down and
Crowded out And you're comfort
Sometimes the place I go
Is so deep and dark and desperate
I don't know, I don't know
(Every Day   Rascal Flatts)

Friday, September 15, 2017

Last Few Weeks..Part 3 What I Learned Doctor Visits

So How did yesterday go?  Some good news, some not so good news. Seems to be the story of my life recently.

First the good news. And the shortest part of the update. The brace is gone!
After 6 weeks of having to wear a stiff plastic brace 24/7 I am now free of it. My neck is still sore, but only due to lack of movement. The brace was made to restrict my movement and let me tell you it worked just like it was supposed to. I am so happy to be rid of it.

Now the not so good news.
Both doctors I saw today, took one look at my right eye and could tell that it moved. My right eye has slide back and dropped some in the eye socket. They didn't need tools to tell. They had me open both eyes and could see that they eye had moved. The risk here is that they need to get it put in place as quick as they can before there is any damage to the eye. Like I said the not so good part of the day.
Next came more disappointing news. They can not schedule the next surgery as of yet. They have not been able to find any place to have the custom plate made. The regular plates that they have work 90% of the time, they just wont work for me. Go figure.

So what's with this plate? Well to explain that you need to see what shape my face is in (see image). Now this image was taken after my first surgery, but before the second emergency surgery.
The bumps you see along the left side of the image are the plates that were used to rebuild that side of my face. They are all still in place where they are supposed to be with the exception of one plate and that is the one causing all the problem.
It is really hard to see, but there is a plate on the bottom of the eye socket on that side. That plate is the one that needed to be remove during the emergency surgery. It was binding with the tissue around my eye. Without that plate my eye is just sitting in there with no support. That is how it has been able to shift it's position

Now in case you wondering, I did ask about the chance of my eye just falling out and they assured me it wouldn't happen. That would be awkward.

So what is next? On Monday, the surgical team will be meeting with another vendor they feel can create the plate. They will use a mock up of my eye socket that they created with a 3D printer and work to fit the custom plate into the mock up first. Once they are comfortable with the fit of the plate they will schedule the surgery.
My feeling I get is that they are going to try to move fast on getting me in and the plate put in place. I can only hope so, this one eye thing is for the birds!
And I wait....

Long promised road
Trail starts at dawn
Carries on to the season's ending
Long promised road
Flows to the source, gentle force, never ending, never ending
(Long Promised Road   Beach Boys)

Wednesday, September 13, 2017

The Last Few Weeks Part 2 What I Know.

So it has been just over a month since my accident and I am healing or so I am being told. Tomorrow is a big day with a series of doctors appointments to check my progress.
I still don't remember what happened that night, however I have learned a few things and can make some accurate assumptions on other things.

August 5th was the Hanover Harvest Festival. It's our yearly community event complete with a parade, a farmers market, a 5K race and ends with a band and fireworks. Every year I work at the local liquor store at some point in time. It is one of our busiest and most fun days of the year to work.

This year was no exception. We were busy right up until close. As we were closing the fireworks started and we stepped outside the store to catch some of the show. We then headed back into the store to finish closing duties and prep the store for the next day.  By the time we were done, we were locking up the store around 10:30. I remember all of this clearly.

There was a band playing next door and we have gotten to know one of the band members and his wife through the store and we stopped by to say hi and chat with them a bit. All in all we done at the store, had time to visit with the band and out the door by 11:00 pm. I can remember leaving starting my moped and taking off the next thing I know it is the next day and I am in the ER.

I have been back to the accident site four or five times hoping it would help jog my memory but with no success. However I have been able to piece together some things. I was found at 11:45 by a father and son who were walking home. According to the first responders, base on my condition and the amount of dried blood, they figure I was laying there for about a half hour before anyone found me. I have had meet the father and have been able to thank him for calling 911 and sitting with me until help arrived.

I know that two things happened. First as I came around the corner I either hit something with my moped or blew the front tire out. Either way the front rim and tire on my moped are destroyed. There is a huge missing section of the rim. The front fork of the moped is damaged and does not turn anymore. Front tire blown and I was sent over the front handle bars of the moped which turned me into a human dart.

This leads us to the second thing we have determined. That is that I hit a sign on my way over the handle bars. I hit the sign with the right side of my face which caused all damage to that side. So this allows us to answer the question "what happens when an stoppable force meets an unmovable object". I know the answer now.

Tomorrow is a big day with doctors appointments so I will update once I know more about surgery dates.
And Thank You for all the messages and notes as I work through this.


Friday, September 1, 2017

The Last Few Weeks... Part 1

I am sorry it has taken a while to write about the last few weeks, but I am struggling with what to write. It is hard when you just don't remember anything and have no answers to what happened. So my thought is that I will put down what I remember in parts and see if I can piece something together at the end. So please bear with me.

Saturday evening August 5th at 11:45pm or so, I was found in a pool of blood on one of the local side streets in our small town. I was transported to a local trauma center where it was determined that I had three fractured vertebra and a cracked skull. To add to it the right side of my face was smashed and most of the right side of my body was covered in road rash.
The first thing I remember is that I was unable to breathe and was being held down. People were trying to communicate with me, but I don’t remember what was being said there were just too many people talking. Finally, all the “talking” stopped and one voice said that they were going to remove the breathing tube. I followed that voice and the tube was removed and I could breathe again. That was after 4pm the following day.
I spent the next day or so in ICU and then was transferred to my own room where I spent the rest of my time. In total I was in the hospital eight days. My right left eye socket has some damage to it, but the doctors feel it will heal. The right side of my face and right eye socket needed to be rebuilt. I have had two surgeries on that side five titanium plates put in. I will still need at least one more surgery on that side of my face, if not two. Right now I can see out of  that eye, but it does not line up with my left eye so I see double of everything.

I am now at home, slowly recovering, but still left wondering what happened. I am also back to where I was when I came home from the hospital after having my stomach removed. I am on a soft diet and have been loosing weight. Before the accident my weight had stabilized to around 189-190 pounds. This morning I weighed 173 pounds. The lowest I have ever weighed, even with the strictures, is 169 pounds.
I have some important appointments coming up on September 14th.
First is with the neurology team to talk about my back. I am in a neck brace that restricts my head and neck movements. I have to wear it 24/7, even in the shower. There is talk about me having to have this on for three months. I am hoping that timeline changes on the 14th.  
The second is with the plastic surgeon. They are using a 3D printer to reconstruct my right eye socket. Once done they will look at creating a custom plate that will help hold my right eye in place and fix the double vision. Both of these need to go my way in order to get back to some sort of "normal" life.

There is one thing I have learned over this little life event that kind of concerns me. With all of the little (and not so little) medical wonder trips I have taken you would think that there would be a complete record of it somewhere. I mean when I showed up in the ICU they should have been able to punch my name and birthdate into a computer and get my whole medical life story. The good, the bad and the ugly. They should have been able to read about everything I have been through, but they can't. The only thing they have access to is what has been done in that hospital's system and since I was unconscious and my wife wasn't there yet, it was all that they had to go on and that scares me.
My wife and I spent so much time telling people that I could not have this medicine or that medicine. Spending time explaining why I had my stomach removed and my limitations around that. I had to explain to doctors that I had a CDH1 genetic mutation and what it was and what it could cause.
I get data ownership. I worked long enough in the data industry to understand wanting to keep control of the data you collect. However, this is my medical history and when I showed up in the emergency room there should be a way for them to have all of this information at their fingertips. They shouldn't have had to wait for my wife and I to fill them in.

I suspect I died in some cosmic shipwreck
With all hands spread all over the deck
What the heck
Then some kind of obscene and unscrupulous mind
Began to pick up what he could find
Added ice, shook me twice, rolled the dice

(School Boy Heart  Jimmy Buffett)

Friday, August 4, 2017

Two Years And Counting Through A Different Set Of Eyes

So today marks two years without my stomach. I had a couple of things I thought about writing about, but then changed my mind to give you a different perspective on my journey. I asked my wife, Edie, to give you a different viewpoint into the last two years. A different look at the same journey by those whose lives this also affected.
Hi everyone!
Roger has asked me on the eve of his two year anniversary of having his stomach removed to write from my point of view about the experience. So, here I am.

When we first found out that Roger had the CDH1 gene mutation, he was struggling with the decision of what to do.  He asked me after a couple days, “What would you do?”  I told him that I thought it was a ‘no brainier’, get the surgery done so that you’re here for your kids and grandkids. I’m not sure when he finally decided to go through with the operation or if what I said had any impact, but he did.
Everything seemed to be run of the mill, or as run of the mill as prepping for having your stomach removed can be. Then things turned south, it was about two days after the surgery…things were anything but run of the mill.  I never regretted my ‘no brainer’ comment so much…I felt like I should have just kept my mouth shut. Complication after complication, the first month we were in the hospital more than we were home.

His sister Melanie, was such an inspiration for him. I’m glad they stayed in such close contact, I however felt helpless, guilty and in the way.  There was nothing I could do to help him, I couldn’t fix him.  I am a wife and mother, I am supposed to fix things I am supposed to make everything better.  That’s my job, that’s what I do.  Reading his blogs was out of the question…I’ve only read maybe three of them.  I start crying every time.
Every time he gets sick I feel guilty, every time he dumps I feel guilty, every time he eats too much I feel like it’s my fault.  He is an adult…an amazing man…strong, gentle, loyal to a fault, and forgiving I hate to see him go through what he goes through.  I have to turn away so I don’t cry…

When you love someone as much as I love Roger, which is only a fraction of what he feels for me, seeing their pain…their struggle, you want to make it better, you want to make it go away.  Knowing that what I feel is only a portion of what he is going through…really doesn’t help.
I try to stand strong, I try to always be there for him.  It doesn’t ever feel like it’s enough.  I listen when he’s frustrated, I let him vent. I wish there was more, so much more I could do for him.
“Eat slower”, “not so much”, “maybe you’ve had enough”….the best and I’m sure the one he’s most sick of hearing “Chew, chew, chew Daddy man, chew, chew, chew.”  These are the things I tell when I don’t know what to say.

The experience did provide me with valuable information:   When someone you love is going to be in the hospital for an extended period have a lap blanket and pillow handy always.  No matter what the procedure or how short it’s going to be always pack snacks and some ‘light’ reading.  Pack chargers and keep your electronics close…you never know when you might be playing a round or fifteen of Alpha Betty.  Family updates are a must.  A one hour procedure will be at least two if not more.  Half hour procedures do not exist.  Cheesecake for breakfast is ok.  For me having a yoga mat wherever I went was huge...the patient waiting room with the ‘relaxation’ or ‘meditation’ station on was a must. 

That’s it.  I know Roger always uses a song lyric in his blogs…the song/phrase I cling to is ”Your life’s not falling apart it’s falling into place” Casting Crowns ‘Just be Held’

Friday, July 14, 2017

Greetings From Texas

Greetings from Austin Texas. I am here on a short business trip and thought I would do a quick update on my most recent test results.

If you remember, the lab test were to try to figure out why I could get so tired to fast. I could be doing fine and then all the sudden be so tired that I could not stay awake. It would happen while at home, in the morning, while driving, or sitting in meetings. It didn’t matter when or where, I would go from being fine to almost snoring in a matter of seconds. That does cause a problem while driving or at work. So I had a battery of test done to try to figure it out. 

All of my test result came back fine. All were low side, which I expected, but all were in the “normal” range. One test I was worried about was the one for diabetes it came back fine. They have decided to continue to test me twice a year for it since my father developed diabetes late in life.

So what about the problem I am have experienced with getting tired at the drop of a hat. Well that is where the poor decisions come into play. Being stomachless has it’s challenges. The first thing that they tell you is that you need to eat 5-6 small meals a day. In theory that may seem like an easy thing to do, but during the hustle and bustle of the day you forget.
My days go fast. I sometimes blink and four hours are gone. I could be running from meeting to meeting, from production, to estimating, to planning or to sales. Or even worse running from plant to plant which is an hour and a half away. Sometimes, many times, I don’t take the time to eat. I figured I would catch up later. Therein lies the problem.

Without a stomach I have no place to store extra food to draw on during the day. If I miss a meal, I just missed it. I can’t eat more later to make up for it or eat more to build my energy up. It is just gone. What the doctors feel is happening is that I am not taking in enough protein during the days leading up to the loss of energy episodes. It is my bodies way of reminding me that it needs more fuel to keep going and I should have eaten more the day before. It is just hard when the hustle and bustle of life steps in. Take this trip for instance. Yesterday was a full day of travel and meetings. I was able to eat twice. During my stomach days I would have been just fine. We will just have to see what the next day or so brings.

As much as a person without a stomach tries, they will no longer be “normal”. Normal folks can eat once, twice or three times a day and be just fine. I have to eat or think about eating constantly in order to function and there are many days I do not do that.
I just want to be normal again and I won’t be. I even pushed my doctor on that and asked what I could do to be more normal and her response was that I am not normal and will never again be normal.  “Normal people do not have their stomach removed” was her response.

So I have to accept that I will always be the exception to the “normal” rule. In other words, as my friends have been saying for year, “there is something off with Roger, we just can’t put our finger on it yet.”
Hey I think I found it.

Have a great weekend.
If you all want me to settle down,
Slow up and stop all my running 'round,
Do everything like you want me to,
There's one thing that I will say to you,
I'm not like everybody else,
I'm not like everybody else
(I’m not like everybody else   The Kinks)