The summer of changes

     Starting the in early spring of 2011, I got a phone call from my family in Florida telling me that my father wasn't doing well.  He had had a stroke in January and had been hospitalized since that time.  I had visited him after that, and he seemed to be progressing pretty well, but he was a cancer survivor, having had throat cancer.  He was cancer free, but the cancer caused damage to his throat.  Previously he was a sports announcer for Disney in his retirement, but he had to give that up because of the changes in his voice after the cancer treatments.  Since the stroke, he had a great deal of trouble swallowing anything and he was only able to drink liquids for awhile and then he couldn't even do that.  He was starting to see that he would never go home from the hospital, and he wanted to be taken off of his feeding tube so that he could die.
     I left home, got on a plane, and flew to Florida.  It took awhile, and he had to request that the liquids be stopped as well before he was able to leave this life.  I had one night, when I first got there to sit with him, and we talked.  He could still talk and understand at that point. I told him what a good dad he had always been to me.  I told him that I thought he was brave, and I still do.
     Wendy and James were vacationing in Florida when all of this came to a head, so they were already there.  Danielle flew in to be with us as well, and Michael wanted to, but he was in the middle of a semester at school, and I told him that he should stay there and go to classes. Dad died with all of us in the room with him.  His wife, her son, his best friend Lewis, and his wife were all there with Dad when he left this world.
     Both my daughters were pregnant at this time and they wanted me to be at the births of their children, which, of course, I wanted to be there for.
     I was finishing up teaching my last year of school so after Dad died, I went back and finished out my school year.  We loaded a moving truck in New Mexico, and with the help of our ward members and friends, we got everything packed and loaded.  Fortunately for us, we sold our house without even putting it on the market to a family in our ward. We stored all of our belongings in Danielle's dining room, and it was packed floor to ceiling with all of our things. We went to Las Vegas several times to look for a home. We lived with Danielle and her family while we were there, and we finally found one and put in an offer on it.  It was a forclosure and in pretty bad shape, so we had quite a bit of work being done on it while we traveled to Florida.  We needed to choose all the design finishes, which was really kind of fun for me. Then we drove back to Florida to sort through all of Dad's things and load a moving truck, full of his things (and my mom's) to head to our new home in Las Vegas.
     At this time, I went to Idaho for Wendy & James' graduation from BYUI and then back again for the birth of their baby girl, Zoey.  Two weeks later, Danielle gave birth to her youngest boy and I was there for that birth as well.
     Then in the late fall, we were able move into our new home in Las Vegas.  It seems that all the major changes that can happen in a person's life happened to me in one summer.
     For all the change in my life at that time, I think we did pretty well.  Except for my dad dying, they were all pretty positive changes so that helped.  I did miss teaching, and I still do, but time marches on.
     We had to find all new doctors for Richard, which took some time.  He has so many, and we can't just get any doctor now, we have to find the best ones.  I think we did okay in that department in the end, but it was a long process.
     Unpacking basically by myself was exhausting, and I swore I would never move again.  I'm just grateful for those in New Mexico that helped us pack and load, to my son-in-law who drove the truck from NM to NV, the missionaries in FL that loaded the truck, my brother who drove the truck from FL to NV, and the missionaries in LV that helped us unload, thrice. I am indebted to many.

Our house in New Mexico

Our House in Nevada

My last good picture of my dad

Mayo Clinic

In August of 2010 Rich had been experiencing increased pain in his left arm. He showed me a major bump there, which I told him should be checked out. He went to the doctor with x-rays. He is already missing 3.5 inches of ulna (the small bone) in his forearm. The larger bone has a plate in it. The plate has pulled out of the bone and is sticking up. One of the nails actually broke. The nails holding the plate into the bone were pulled out. The bone has never healed under the plate. This was (once again) caused by a medical professional during a routine exam. The orthopedic surgeon in Los Alamos suggested amputation. Richard would rather die. Honestly, that is what he said. There were so many issues even if we did find a doctor that would do the surgery, that I don't know if it is a good idea. He had a MRSA infection in his ankle, which is dormant at the moment but evidently can come back at any time when the body is open to the air. The blood flow in that arm is minimal because of the loss of muscle and bone.

View from the top of the plate that was in the bone.  The short screw on the left was broken off, and is still in the bone.  

View from the side of the plate, which shows how the plate was bent.  This occurred while on the bone, and is the reason for the screw being broken off as well.  

While discussing this at  work, my co-worker suggested that we go to Mayo Clinic.  We were going to Florida anyway in August so I called to get an appointment at the orthopedic clinic at Mayo in Jacksonville, FL  

Right before we left, we went to see an orthopedic doctor in Santa Fe that Richard had previously seen and liked. We asked him about going to Mayo. He had done his residency at Mayo and so he was very supportive of going there, and if they wanted to do surgery, he suggested that we have them do it.  He talked about a new bone hormone that induces bone fusing.  This bone hormone will help to encourage the healing of new bone that they would get from Rich’s hip to put in the arm. 

The surgeon at Mayo thought that he could fix the arm by taking out the hardware, cross-connecting the radius to the ulna, straightening out the arm, and buffing up the ends of the bones to encourage them to heal. He thought that they didn't need to use bone from Rich's hip, but he could use cadaver bone.  

Richard went back to Florida in October for the surgery.  I was working and needed to stay home.  I had a job, and to take care of Michael, so I didn't go.  My father and sister-in-law went to Jacksonville and sat with him there.  He went into surgery at 5:30 am and didn't come out until 1:15pm.  They took the two bones nearest the wrist and connected the two of them with hardware. There are 10 screws in that hardware. They did not have to use any bone fragments from his pelvis but they did use the bone hormone. His forearm is now about 1/2 an inch shorter than it was previously. The doctor did this so that the bone did not have to heal in two places, but only one. 

An amazing side note here is that Richard was contacted by a local bishop while in Jacksonville.  They found out that he was there, and made the contact.  Amazing!  

We thought that it was just a matter of healing at that point, and he went to the surgeon in Santa Fe for follow up.  We went in for about the third follow up and found out that all the healing that was previously showing up was gone. It didn't heal.  It never healed.  Richard blames that on medications that he was on, which he feels that he 

In 2013 we went back to Mayo Clinic for another try.  The skin seemed to heal really well after the surgery and I was hopeful that the bones would as well.  They never did.  His arm is still a non-union.  He wears a brace to protect it and it is cross-connected (see photo.)  

After writing this post, I talked to Richard about going to see the local doctor about doing the surgery again, this time using his own bone from his hip/pelvis. This local doctor is an expert in non-unions and this was his suggestion.  He also specializes in foot/ankle injuries, so having him to do surgery on the ankle fusion seemed logical as well.  We actually got his name from a former ward member who works in the orthopedic field here in town. I am anxious to talk to him now that things have had time to settle down and see if one or both of those surgeries could be done.  

The second time surgery was done at Mayo Clinic

After the second surgery.  We had high hopes, but  sadly, it was, (and still is) and non-union.  

Serving and Being Served

In the LDS community, it is expected that you will serve others.  I have done my share of serving in my ward, my community, and of course, my family through the years.  One thing that I have noticed through this experience is how hard some people find it to be served by others.  
Let me first explain that service involves any kind of help to another person, whether that be providing meals, cleaning someone house, being where you need to be to help someone with something they might be going through in their lives.  I was certainly a fortuante recipient of such service, especially during these couple of years in my life.  
As a society, LDS people are good at serving others.  However, they are no so good at receiving service.  I know that that might sound silly for those looking at it from the outside because people can't recieve help if there is no one to help.   

Let me go back to a conversation that I had with my father about two years into this experience.  My son, my father, and I were in the car together and I am not really sure what the topic of conversation was at the time, but my father (not LDS) said, "Michael, there is something that you need to realize. No one is ever going to do anything for you without expecting something in return."  I was stunned. I guess I was stunned because I have spent years seeing people do just that, and especially in the previous two years of my life! I have also done things, and even looked for things to do to help people with no thought or expectation of anything in return. I described my experiences to my father, and concluded that people do things for others all the time without expecting anything in return. Doing so is actually part of our religion. It comes partly from "Inasmuch as you have done it unto one of the least of these, my brethren, you have done it unto me."  (Matthew 25:40)

When I was the one that needed help, I felt no guilt for accepting what I could not do for myself. I guess I was humbled sufficiently to realize that without help, I could not carry this load, and I don't think I could have.  I depended on others sincerity when they offered to help, and graciously accepted that help.  

Since that time, I have served in positions where it was my responsibility to meet the needs of those who had them.  I have seen a lot of people refuse help.  It could be because they thought it make them look weak, or not self-sufficient. Maybe they don't want to think of themselves as "one of the least."  I don't really know what their thinking was, but I can tell you that there needs to be someone to help in order for someone else to help.  Being that someone is not anything to be ashamed of. I think it is part of the humbling process described in this scripture:

Ether 12:27

• Book of Mormon

"And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them."

 What I can tell you is this: Being the one that needs help is part of the plan.  It does not show weakness, it shows honesty and humility and the desire to be taught of the Lord. It may be hard for some to ask for help, but if they didn't, the joy of giving service to others would never be felt by people who desire to serve. There are lessons to be learned through helping someone else that cannot be learned by any other way. There are also lessons to be learned in being the one that is receiving the help. Everyone needs both of those experiences.  

Another thing I learned is that people want to help in ways that are comfortable for them.  There may be things that need to be done that no one else wants to do, but there is something that comes from giving in the way that is hard that cannot be learned by doing the thing that is comfortable.  People are VERY willing to do what is in their comfort zone, but refuse to do what needs to be done when it is outside of their comfort zone.  That is the point at which they become the widow giving their mite. 

This is not to say that doing what is in your comfort zone is not giving and serving.  It is. But when you go beyond that, and are willing to say, "I will do whatever you need me to do, even if I don't want to do it."  you are giving in a way that will change you deeply. Then you truly giving the widow's mite to the person you serve. That is a beautiful thing for both the giver and the receiver.  

http://farm4.static.flickr.com/3515/3216062959_3f7045e2cf_o.jpg
Life is dirty.  Don't be afraid to help in ways that are uncomfortable. 

Legal Action

People have asked me if we sued anyone for the damage done by medical professionals (or anyone else).  The answer is no.  We never have.  I hestitate to say more than that in a public setting.  Email or PM me if you have additional questions about this issue.

Everyone has something

In writing this blog, I don't want anyone to think that I think that I am the only one that has had hard things in my life.  In fact, I know that everyone has hard things in their lives.  That is actually the reason for this blog.  It is my hope that by telling my story, someone will be helped.  Maybe someone will be in a similar situation and have similar things to deal with.  Maybe someone will go through just a part of this and find what I have to say helpful.
I also want to acknowledge the hard things that you go through.  Life is hard.  It doesn't turn out the way we thought it would, or hoped it would, or planned for it to.  It is for those reasons that maybe someone will be motivated to make some responsible decisions so that their family will be protected for future events.
Once I heard from someone, "I don't know how you do it." I told them that everyone has something, and they said to me, "I don't."  What I wanted to say was, "Watch out!  It's coming!"
Making good decisions does helps to protect us from things happening in our lives, or makes them more bearable, but things still happen that are beyond our control.
The Boy Scout Motto of "Be Prepared" certainly helps, but things still happen and you never know the day that they will happen.
When life gets hard, that's when our true character is seen.  Sometimes I've done okay, and sometimes I haven't, but I have never given up, and that is all it takes.

OT/PT

Starting in Kindred Hospital, Richard began receiving occupational therapy.  I mentioned before that in St. John's the OTs would try and talk him out of receiving therapy because it was difficult to move him to get him to the therapy room. One of the OTs actually broke his arm while doing therapy.  It is as if she didn't even look at x-rays of his arm before she started therapy.  What she did would not have hurt most people with normal bone structure.  Richard didn't have normal bone structure, and it caused an injury.  She told him at the time that she was sure that she had just broken up scar tissue, but the x-rays afterward show otherwise. She never came back to give therapy to Richard.  We've never seen her again.

While in HealthSouth, Richard was allowed to receive his first physical therapy.  It was aggressive.  He made tremendous progress there, and I couldn't believe it when he walked again.  It was really a miracle.

After he got out of the hospital, he started therapy at a hand center in Santa Fe.  They were afraid that they were going to hurt him, and didn't push him enough.  Sadly, there was a lot of movement that he lost during that time because they didn't want to work him too hard.

He also received OT and PT services in Los Alamos. Still, they were not wanting to push.

In the end, I find that OT and PT specialists are either wonderful, or they are terrible, and there really isn't too much in between.  The problem is that you can't do without them at all.

The hippocratic oath vows first to "do no harm" but that cannot be done without knowing what you are dealing with.  When serious injury has occurred, don't let anyone touch you that has not seen your x-rays!  It is dangerous.

Finding a balance between pushing you too much and not enough is an art that is learned only through experience. I find that it is something that most occupational and physical therapists struggle with, especially in cases with serious injury.

Visits

Within the first couple of days at UNM, I got a phone call from a member of the Los Alamos Police Department wanting to come and talk to Richard about the accident.  I explained that he was not conscious so he might not want to make the 100 mile trip.  He said that he would like to come anyway.  I was thinking, "Knock yourself out!" but I probably said something like, "Do what you have to do."  Of course, when he came, he came in, saw how Richard was, and turned around and left.  I expected him to come back later when Richard was awake, but he never did.

Richard's boss also asked to come to see him in the first 24-48 hours in a phone call to me.  I explained that he was not conscious, but he insisted.  He showed up, saw the situation, and left.  I never saw him again. He gave me the impression that he wanted to see for himself, because he didn't believe he was hurt that seriously. I thought it was strange.

Many people came to visit, and it was easy to tell those that really cared from those that didn't.  Sometimes when I was out of the room to get dinner, I would come back and find that someone had been there and left a gift or something for Rich.  Some people came often and stayed long.  Some people didn't come often and they didn't stay long, but I could still tell that they cared. I heard from people that I hadn't heard from in many, many years.  That was wonderful, and it was heartwarming to know that so many people did truly care.

If you were one of those people, thank you.  Thank you for showing that you cared in whatever way you did.  There are too many small, kind acts that were done for our family for me to list them all.  The truth is, there were many large acts that were also done.  I haven't forgotten them.  They still touch my heart to know that people were willing to help in whatever way they could. In that way, it was a magical time.  In most ways it was a horrific time.  It is funny how sometimes those two things go hand in hand.  One thing is for sure.  You find out who cares, and who doesn't.

Have some fun!

In the hard times, it is important to find joy and fun.  As soon as you can, get out and enjoy some things in life! You will feel better, build memories, and get a sense that life goes on.

In June, my dad came to visit.  I wanted to do something special with him for Father's Day so we on a hot air balloon ride.  It was awesome!  Dad is gone now, but it still makes my heart happy when I think of the fun we had that day.  (Richard was in St. John's at the time.)

My dad on the far left while we flew above Albuqeurque

In July, after we had  figured out how to get Richard in and out of the car, HealthSouth gave us a couple of day passes.  On the first one we went to the 4th of July celebration in our hometown.

See what a wonderful, supportive place I worked?  

The chance to talk to people was so great for Richard.  He was exhausted after the day (and so was I) but it was such a great day for us!  

On the second one, we went to the zoo. I cannot believe how exhausted we were when we came back to HealthSouth!

After Richard was released, but still in a wheelchair, and his parents were there, we decided to go to the Albuquerque Balloon Fiesta.  Perhaps we bit off more than we could chew, but it is such a beautiful event!  Parking was a nightmare there!  By the time we got him dressed, fed, and out the door, all the handicapped spaces had been claimed so we had to try and push a wheelchair through the dirt and up a large hill for quite a distance before we got to Balloon Fiesta Park. It was still worth it.  It is in October.

Michael, Richard, and his mom (Charlotte) 

In 2009, just about a year after the accident, Wendy got married.  To me, her wedding was a celebration of our family.  We made it through a very difficult year.  At the end of the reception, what did we get to see?  Wendy dancing with her father.  It was a miracle.  We were so blessed!

By 2010, although Richard was still mostly in a wheelchair, we decided to do some things that we didn't know if we would ever get to do again. We went to Hawaii. All of our kids and grandkids were supposed to come with us, but Austin was in the police academy at the time so we decided to do something with them later.  Michael, James and Wendy accompanied us to Hawaii.  We had a wonderful time.

You can see the wheelchair in the background, but for some reason, I don't think you are looking at the wheelchair!  And sea level - NO OXYGEN!!!

They had handicapped wheelchairs at Hanauma Bay!

We hiked the mountain to see this view

Michael made it too!

The newlyweds

And Richard found a cool spot in the shade to do his favorite thing, read!  

Also that year, we drove to Las Vegas and I met my college roommate there.  She and I went to a Donny.com Get Together in Las Vegas. Very few things make me as happy as Donny does, and being with him for a weekend was just what I needed. I met some new friends and was just able to completely relax and enjoy something for myself. When you are a caregiver, you have to take time to do things that bring you joy.  If you don't, you will loose your sanity.  Donny hasn't had a Get-togther in a long time, but I am so grateful that he had the one in the summer of 2010. It was awesome!  (And thanks to Edie for coming with me!)

                
at the meet & greet                      At Hoover Dam           On the bus to Hoover Dam
after the concert

How can I help?

This was a violinist at Mayo clinic playing in the cafeteria area. 

When a person is in the middle of a crisis, there are many people around them that want to help.  The problem is that people generally don't know how to help.  The purpose of this post is to help you know some things that you can do to help.

Every situation will be different, but I am coming at this from my viewpoint so it is best used for people who have someone in the hospital for an extended period of time, especially if the hospital is far from home.

• Gift cards for food
• Magazines, reading materials, snacks.  Find out a favorite snack or two and provide them. 
• Running errands
• Providing rides, food, tutoring, etc. for children at home
• A room or home for them to stay in close to the hospital.  
• Having someone else there when the doctor talks to you makes a real difference as well.
• Sitting with the family while they are in the hospital or their family member is having surgery
• Watching children for family that wants to go into ICU while the children cannot.
• Do yard work, house work, etc. for a home that they may or may not be living in.
• Listen.  The family usually needs to talk. 
• Provide religious support if needed.  We got priesthood blessings and hold fasts, but each religion will have their own ways of dealing with crisis. 
• Be supportive of religious and spiritual needs.
• Send cards.
• If you have expertise in legal documents, provide advice for insurances, taxes, etc. offer it.  
• Organizing bills to provide due dates, etc. 
• Finding items and documents at home and taking them to the hospital. 
• Research medical procedures, government offices overseeing the facilities the patient is staying in, etc.
• Provide Audio books of interest for patient. 
• Financial contributions to an account set up for that purpose  (You might want to ask what the contributions will be used for before you make this decision.) 
• Provide rides for family members to the hospital for a visit while you are there for another reason.  
• CDs of harp music or other soothing music
• Contact people that the family might have appointments with to cancel them.  
• Take the caregiver to a movie or dinner to get away.  
• Email or Facebook message, just to let them know that you are thinking of them.
• Balloons
• If you play a musical instrument, come to the healthcare facility and play.  Everyone in the place loves it, especially when it is soothing music.  
• Read a book to the patient. 
• Give the patient a foot massage. (or whatever body part is not injured)   
• Go to the hospital and give the patient a haircut, especially if they have been in there a long time.  
• Write thank you notes for the family.  My sister-in-law did this, and I just provided a list of who to send a card to and why.  
• Pray.  I was surprised at the strength I felt through the prayers of others.  

One thing you can't do is represent the family when privacy laws might be in force. There are a lot of privacy laws that make this situation more difficult because it is just one more thing that the caregiver has to take care of personally, and there are already too many of those.

Long-term disability insurance & Income Insurance

Ten years ago I was married to an engineer who had a good paying job with a government contractor.  I worked because I loved what I did, not because we needed the money. In spite of that, I  had a college education, and I was grateful I got to do what I loved to do.  I didn't think he would ever be anything but an engineer, and I didn't think I would be anything else but a teacher.  Then, one cold February morning both of our lives changed forever.  I never thought I would need the insurance that we had.  Nobody does.

I have mentioned before that Richard believed in being over-insured.  He had the options of getting long-term disability insurance, which pays a substantial amount monthly.

Income insurance is also an option and it covers up to 70% of the income of the injured. It is very inexpensive insurance.  The thing to keep in mind is that they take into consideration all of the other sources of income (Social Security, disability insurance, etc.) to get to that 70%.  They also take into account any other family members that receive SS benefits to get to that 70%. In our case, this payment is pretty minimal because most of that 70% is provided by the long-term disability insurance and social security benefits. Still, every little bit helps.

Consider the kinds of insurance that you have and whether or not you could survive on the insurance that you have if needed.  We are fortunate in that we are debt free, so living on 70% of Richard's income meets our everyday needs. We are not able to afford extra medical procedures or devices that are not covered by insurance, but we will have food to eat.

A family member of ours retired early and then lived a long life after retirement.  That retirement income was sufficient when he retired, but by the time of his death over 30 years later, it was not enough. Seeing that, I realized that I needed to provide some income for my family to finanically survive.

This post is mainly for the benefit of those that are young and deciding on what insurance they feel is necessary.  I hope that my experiences will help someone realize that they need more insurance than they currently have. The other advice that I would have for you is to have two ways to produce income. If you have a college degree, have a skill as well that can provide income if you need it.  You just never know, and it is better to have more than enough options than not enough.

Ten years ago, Richard was an electrical engineer, and I was a teacher.  Now Richard is Santa, and I sell real estate.  I never dreamed we would be in this position, but that's the thing with life.  You just never know....

Surgery in the ER

This picture was taken at Kindred Hospital.  You can see how they marked where the infection was, and you can see it oozing infected puss from the ankle.  

On April 24th, while Richard was in Kindred Hospital, he was being bathed, which was not an easy procedure, and in the process they hit his external fixator on his leg and when they did so, it was excruciatingly painful for him. He mentioned it and they took a look at it and thought that the ankle was infected, so they called the hospital and they said to bring him in to the ER and they would probably perform surgery on him that night. I made it to the hospital with him and waited in the ER for quite a while, but they never could take him in because the operating rooms were full. We were told that the surgery would take place the following morning. Upon hearing this, I left, thinking it was just not going to be done that night. When I went to the hospital the next morning, Richard was VERY animated in telling me what went on that night after I had left.  

When he got to the hospital, they asked him what his pain level was and he said 8 so they gave him 8 mg of morphine. Since they didn't have an operating room, a resident surgeon came into the ER room that he was in, at this point, it was just after midnight. He was not the surgeon Richard had been told was going to handle the situation. He told Richard that since they couldn't operate in the operating room, they were going to start draining the infection there in the ER. Then, when Richard asked the resident what he was going to get for pain, he told Richard that he wouldn't feel anything. Richard insisted that he receive morphine if he was going to be cutting on his ankle.  The doctor finally relented and said that he would give him 4 mg of morphine.  He got eight for just laying there earlier, but now when they were cutting on him, he was to just get 4.  That is what was written in his chart for how much he would get for a dressing change on his wound vac, so that is what the doctor went by.  

He injected the ankle in 3-5 different spots with a local anesthetic, which was extremely painful.  Then he started cutting and squeezing and swabbing the ankle. Richard was screaming that it hurt, but the doctor didn't seem to notice.  Richard said that he was "screaming like a little girl with her arms being ripped out."  This went on for about 15 minutes.  When he finished, he had it packed and bandaged so that they could work on it again on the operating room the next day as orginally planned.   The external fixator was still in.  The assistant surgeon came and talked to him before the surgery and Richard said that if they were thinking about removing the external fixator, this would be a good time, because he was not going to let them remove it while he was awake.  So, the next day at around 6:30 in the evening,  they went in and cleaned out that ankle and removed the external fixator.  Of course, the entire time, he is denied food because he was going to be taken in for surgery, so it was well over 24 hours with no food at all. One would think that a medical professional, who thought that a procedure would be painless, saw the patient thrashing about with pain, that they would stop and increase pain meds.  Why he didn't is really beyond my understanding.  

Here are x-rays from before the fixator was removed, but seem to have been taken just previous to the surgery: 

When I saw it at the packing change, this is what I said, "They changed the dressing on the ankle.  It was horrible.  It makes me wish for the days when he was heavily sedated.  He was in extreme pain and basically made them stop until he had more meds. He is resting now.  The wound is large and gaping.  I thought those days were over.  I see a would vac on this in the future.  I wonder if he will ever be off a wound vac."  

It was at this point the doctor emphasised how important it would be that he take his antibiotic.  He explained that the infection had not gotten on the hardware, but that it was close.  In order to keep the infection off of the hardware, the anitbiotics would need to be taken religiously. (This was just prior to his being admitted to St. John's, where his antibotics were withheld from him, and the infection did get on the hardware, which eventually had to come out because of it.)

I have to say that this two days was probably among the most difficult times of the entire ordeal.  Richard develped a pretty high pain tolerance through all of this.  I plan on writing another post about pain tolerance and medication, so if you are interested, you can keep an eye out for that. The fact that Richard was in such pain at this time speaks volumes to me, because by this time, he was pretty used to constant pain.  

I should also let you know that "The Center For Infectious Disease" was involved at this point as well, because this was a MRSA infection, and they keep a pretty close eye on those types of things.  

Lessons to be learned: If a doctor is doing a procedure on you without proper pain medication, tell them that you deny the surgery.  They have to have your permission to do surgery, and without it, there is nothing that they can do.  We realize now that he should have just told them that they didn't have permission to "drain the infection."  If you are in the medical profession, listen to your patient, and notice if they are in obvious pain, rather than just ignoring the fact.  

After the fixator was removed, and some healing had taken place, the ankle looked like this:  

PS - All of these pictures are of the outside of the ankle.  The injury (and it was quite a significant injury, it was listed as severed at the scene of the accident) was on the inside of the ankle.  

Premonition

Before the accident Richard had a premonition of a car accident. He saw it one morning on the way to work. He thought that it was going to take his life, so he was trying to take care of things before he died.  I didn't know any of this!

Richard was having health issues that we were trying to deal with and figure out the causes of them.  He had been going to a pulmonologist and had just been put on oxygen.  He had high levels of red blood cells and had to be given phlebotomies regularly in order to keep the red blood cell levels down.

In spite of the fact that I didn't know about the premonition, I knew something was going on with him.  We were making plans to go on an Alaskan Cruise with friends of ours for our 25th wedding anniversary.  In spite of that, he seemed angry all the time.  He yelled a lot and I could tell that he seemed overwhelmed with things.  I knew that things at work had been difficult and that is what I chalked it up to.  It was clear to me that he was depressed.

When my bishop came to the hospital after the accident, before he was life flighted to Albuqerque, I told him that if it was going to take Richard fighting for his life for him to live, I didn't think he would fight. My bishop said to me, "Don't you think you are worth fighting for?"  I really didn't. It had been miserable at our home for some time.

A social worker came to see me before Richard left UNM asking me questions that lead me to believe that they thought this accident might have been intentional on his part.  They concluded that it was not. I concur with that assessment.

I guess part of his stress at the time was the premonition that he had, and the pressure he felt to get things ready for his death, which he thought would happen.  He thought he had more time to get ready, but I guess that it one of those things you never know how much time you will have to get ready for.

There are many lessons to be learned through all of this, and to list all the things I have learned would be impossible, but I will give you an idea of some of the things I have learned.

• If the Lord wants to get your attention, he will. 
• The Lord has a way of teaching us what we need to learn, and it isn't always pleasant.  This is not because he doesn't love us, but because he does. 
• It is better to learn the lessons on your own or through somone else's experience than to have to be taught by your own experience.  
• In spite of all you are going through, the Lord is ALWAYS there to help you through it.  
• Sometimes the Lord gives us warnings before something life changing occurs.  
• Things that seem difficult at the time might seem very minor in comparison in a very short period of time. 
• Life is not all about work.
• There are SO many good people in the world!  
• My family will always be there for me, and so will my close friends.  I learned who I can count on.  
• I have the best kids anywhere!  
• Life can change in an instant. 
• Bad things seem to happen quickly, while good things seem to take more time.  
• I couldn't have done any of this if it were not for the employees at Chamisa Elementary School in 2008 or the members of the White Rock Ward of the Church of Jesus Christ of Latter-Day Saints in 2008.  
• There are a lot of lonely people out there that don't have anyone they can count on.  
• Being a care taker is harder than I thought it would be. 
• I hate ice and snow.  (I knew that already, but this kind of sealed the deal!) 
• You can find things to laugh about, even under the most horrific circumstances.  
• Pain levels are subjective.  

Medicare

Most people know that medicare provides medical coverage for people who are retirement age.  It also provides medical coverage for those who are disabled, but there are a few requirements you have to meet first.

• Be at least 18 years of age
• Qualify for Social Security Disability
• Wait two years after you have qualified with SS

If you don't have insurance, you are two years with no coverage.  If you do have insurance, usually they will change the way they pay after the two years.  Once the 2 years are up, the insurance will pay as if you had Medicare, even if you don't have it, so you better get it or you will be paying a lot out of pocket.  

In our case, if Medicare pays the claim, our insurance will cover the difference between what Medicare pays and the amount of the bill.  There are exceptions, but they are pretty rare.  

This is a double edged sword though because if Medicare doesn't pay for some reason, (and it can be all kinds of crazy reasons) then your private insurance will not pay.  For us this is true for diabetic shoes (because the office has not billed it with the right codes according to Medicare).  It is also true for certain types of treatments like experimental treatments.  

Generally though, if you have Medicare and another insurance, you won't pay much in out of pocket expenses for doctor visits.  Medical equipment is also covered.  

My children and myself have continued to be on our health insurance that was provided by Richard's work at the time of the accident. We do not have a secondary insurance, but like I have said before, his insurance was good. We pay more of the premiums ourselves, which ends up being a pretty significant amount of our income, but we have it, and that is worth a lot.

There are some doctors and facilities that do not take Medicare.  Medicare has rates that they feel a service is worth, and they pay 80% of that amount.  Either you cover the other 20%, or your secondary insurance picks up some, or all of it.  Some doctors will not take that amount paid by both insurances together because they don't feel that Medicare's fee of what it is worth is correct. This could limit the choice of doctors that you have.   

Wound Vac

I had heard about wound vacs because I had a friend that worked with them years before so after Rich's first othopedic surgery, I asked about them.  I was told that they probably would be using one, but it was a little early for that.

Within just a couple of weeks, a wound vac was put on both his ankle and left arm.  He was still at UNM at the time.  They would come in every other day and change the dressings on the wound vac and when they would, the wound would be open for us to see.  They dressed all in sanitary clothing from head to toe, they wore face masks and gloves. The dressing changes were painful, especially on the arm. When he was transferred to Kindred, the continued to do the changes, but they didn't wear their sanitary clothing.  Most of the time they wore masks and gloves, but that is it.  Is there any wonder that he got MRSA when sanitary changing of this wound vac was not a priority?

Richard can explain to you all the scientific data dealing with how a wound vac works.  I don't understand all of that, so I will explain it as I see it.  They put a sanitary sponge against the open wound and there is a tube connected to a plastic disc that sits on the sponge.  Then they put a dressing over that with the tube coming out of it.  A vacuum begins to suck on the wound at a tremendous force.  This helps the wound heal from the inside out at a much faster and safer rate than it would heal if it healed on its own from the outside in.  This machine was invented by a nurse, who I am sure is a very wealthy individual now. (As it should be.)

He had these wound vacs on both of these spots for months, and the dressings were changed every day.  They eventually took the wound vac off of the ankle, but the the arm still needed more time.  He had it on the arm for longer.

Both eventually healed, although you know by now that the bones in the arm have never healed.  (If you don't know that story, another post will tell you about it soon.) When we went to an orthopedic surgeon in about 2012, and showed him pictures of the arm, he told us that a wound vac should never be used on a bone in the condition that Richard's arm was at the time.  He said that there was no periosteum on the bone and because of that, putting that type of vacuum on the bone actually killed it instead of helping to heal it.  Of course, we had no idea that it was an issue at the time.

"The periosteum is a soft outer covering over the bone’s surface. It provides blood flow to the bone which lets a bone heal, grow, fight infection, and stay healthy. This layer is very thick in children and gets thinner as we get older." (http://noelhenley.com/four-layers-of-bone/)

Once again, the decisions of the doctors resulted in a permanant condition that we are still dealing with.

So, if you have a loved one on a wound vac, it should not look like this:

If it does, please question the use of a wound vac.  If there is a layer of covering on the bone and some tissue around the bone, you should be fine. Another indicator was that the dressing change on the ankle was mildly uncomfortable, but the dressing change on the arm felt like, (in Richard's words) someone was trying to suck his fingernails out through the wound vac. It was very painful.  He hated the dressing change on the arm.
The bottom line is that if a wound vac is used correctly, it performs miracles. I am grateful for the one on Rich's ankle, in spite of the MRSA infection.

Being Overwhelmed

Just like most adults, I have been overwhelmed many times in my life.  I have had three small children and a husband who all needed my help at the same time.  I have taught school and had numerous students at once need my help, etc.
But those things were nothing in comparison to what I felt in the days after this accident occurred.  I felt as if the weight of the entire world were on my shoulders.  I know it wasn't, but that is what it felt like to me.
I needed to take care of my kids, contact family members to let them know what happened, and keep them updated, get legal papers for the hospital, take over responsibilities that were not normally mine (like paying the bills), dealing with numerous insurance companies at once (health, auto, accidental death and dismemberment, short and long term disability insurance, income insurance, life insurance).  I talked to attorneys (there will be a post about that later.) I had to deal with issues at Richard's work, my work, write emails to keep everyone informed, etc.  I was concerned about how I was going to file my taxes, which Richard had always done before.  I needed to arrange for a place to stay for some family members who came into town. Oh yea, and we were having work done on our house at the time as well.  In fact, I had a trench dug around my entire backyard that was sitting there open for months!  (We had completed running a gas line from the kitchen to the fireplace just before the accident.) When my father came that summer, we were taking up tile flooring to put in new flooring, and my dad, at over 80 years old was out there hauling tile out of my house!  We were also dealing with the aftermath of a very bad kitchen install done by Lowe's and that had to be taken out and re-intalled by someone else which involved many different companies coming and giving estimates on what that was going to cost. That was about the time the accident happened, so I had to make the decision on which company to hire and get that going, and negotiate with Lowe's on a settlement for their terrible install.  State Farm was threatening to cancel our car insurance so I was calling around seeing if we could get insurance elsewhere. I saw a counselors, social workers and doctors, lots of them. I was reading books that taught me much about dealing with the faith that I needed to make it through it all.
When I got home the first time, I remember just shaking as I tried to start to accomplish all that needed to be done there while my husband sat in the hospital dying. To say that I was overwhelmed was an understatement.
I remember once, when I got a phone call from Richard's work saying that I had not paid my health insurance, which for some strange reason had to be paid to a different address than it had before, I just said, "I have so many fires going right now that I am dealing with the raging ones.  The ones that are smoldering are not getting my attention."
I did have help.  I had volunteers to help with much of what was going on, and I couldn't have done it without them, but the truth was, I was in charge of telling them what needed to be done, which took a lot more mental organization than I had at the time. There are also privacy laws that make it impossible for people to help you with many things. It would have been great if people could help with some things, but legally, they could not, not even my own children could do many things that needed to be done.
I remember each night that I took time to be grateful for what I had accomplished, trying not to dwell on all that still had to be done.  I felt guilty everytime I drove home to get some things accomplished because I wasn't there at the hospital if Richard needed me.
I did take some medication.  I took Xanax and Ambien, because I couldn't have slept at all without it.

My best advice about this stress is:

• Breathe!  
• Pray! 
• Don't take it one day at a time.  Take it one hour or minute at a time. It makes it seem less overwhelming.  
• Take time each evening to realize all you got done each day and acknowledge those things.
• Don't feel guilty for what you missed or what you didn't get to. Realize your limitations.  Tomorrow is a new day.
• Be grateful for those people in your life that are sitting beside you, that didn't go away when things got hard.
• Accept help. 
• Find joy in anything that you can.  (Richard's feet started peeling, and I loved peeling the skin off of his feet! He would never let me do that if he was awake and alert!) 
• Have some Xanax on hand, and use it.  
• I went to the temple (hopefully you have some similar place of peace and strength.) 
• Look back occasionally on how far your loved one has come, even within the last couple of days or last week.  
• Take comfort in the knowledge that others have been through similar things, and lived to tell the tale.  

The Albuquerque Temple that provided a place of peace for me.