Rest in peace our beloved John D. Harris 1969-2011

I had hoped I would never have to write this blog entry and I must say that it is unequivocally the hardest thing I've ever had to write. There have been times over the past couple of years when I have procrastinated with updating this space and it has usually been because I simply couldn't find the words. The same has been true since July 29, 2011 at 5:00pm.

The initial thought with starting this blog was to allow everyone to have the perspective that we had. We wanted people to feel as if they were walking alongside John in his journey to survive and we wanted everyone to feel included in his healing process but we knew that logistically it would be impossible for us all to be there...there isn't a hospital room (or hospital for that matter) that would be big enough to hold all of the folks who loved John or felt close to him. We knew that John was loved by so many but we really had no clue just how many. There hasn't been a time in the past two years when we haven't gotten emails, calls and inquiries daily asking how John is doing and if there was anything that could be done to help. We will never be able to thank you for those inquiries and I know that personally, it helped give us hope and perseverance at times when we had none.

After a few days, I began enjoying writing this blog and sharing the events of John's path. There were so many times when I wrote through tears and my heart ached to have to share the bad times but I always looked forward to getting to the computer to type in the good stuff too! It was a cathartic process for me and it felt good to be able to honor John by getting the information out.

I will never be able to express how much we appreciate everything that each and every one of you have done. We appreciate your thoughts, your prayers and your steadfast love for John and for us. I'm not sure how we would have made it through this process without you.

I feel an obligation to let everyone know what happened at the end of John's life. I think because you have all been with us through this process and because this process now has a conclusive ending allows me to share a perspective that most might not have experienced. It's not that John's death was totally unexpected but in some respects the timing was unexpected. In May, John began experiencing painful bouts with dystonia. Dystonia can be caused from heredity or from a traumatic event and John's was caused from the latter. When his body went without oxygen after his heart attack and then again the next morning, or at some point during these hours, dystonia set in. At first we noticed some muscle stiffening but it didn't seem to cause him a great deal of pain. He continued to progress in physical therapy and for a few months, it looked as though he might be able to stave off the horrific side effects. Unfortunately, as the days passed, it became a battle just to stay at a plateau level and more recently, John's body became unable to keep the side effects away. It started with a rigidity in his hands and legs and before long, he was having great difficulty standing, getting in and out of bed and he required assistance with all tasks. John lost the ability to eat on his own and wasn't able to walk for any distance. Eventually, even swallowing liquids became impossible and in a final blow, John lost his voice. He could say a few words and always said Holly and I love you but we could tell that it took a huge amount of effort to speak. He had difficulty lifting his head and there were times when we wondered if he had lost his will to survive.

While in nursing care, and since John's heart attack he has rarely been left to be cared for hospital/medical staff. We learned quickly that we needed to oversee all aspects of John's care and most recently, this involved hiring a full-time caregiver in addition to nursing home or hospital staff. Frankly, we just never felt like any level of care was good enough for John! Holly and John's family took turns by his bedside and the hours got long. Toward the end, John was in so much pain, medications lost their effectiveness. He was given large dosages of powerful pain medications but they didn't seem to help with the pain. I can tell you that seeing someone you love in so much pain for such a long time is one of the hardest things ever and we prayed for a solution. We were okay when John had been kept comfortable but we were absolutely distraught seeing him having so much difficulty and being in so much obvious pain. He was so tough through so much but we could tell that the pain was excessive. He would sleep for a few minutes at a time and then wake up writhing in agony. His physicians tried upping the dosage on his baclofen pump and combining this with pain medications but the only time he was comfortable was when he was asleep.

After being in the hospital about a month ago, he was released back to the nursing home. Within a few days, the pain got worse and soon, Holly made the decision to get him back to the hospital. The next few days were spent trying to keep John comfortable to no avail. Infection spread throughout his body and his doctors couldn't pinpoint the cause of the infection. On Wednesday, July 27, John was not as coherent as he had been but we were relieved that he was at least doing slightly better and seemed to not be in pain for several hours at a time. At this point we were willing to trade off being able to fully communicate with him for him to have a good level of comfort. This period of seemingly feeling a bit better didn't last.

On Friday morning at approximately 3:00 am, John began vomiting and had to be intibated. He had been unable to cough to clear his chest fully and the fluids had built up. We all rushed to the hospital and were told that John had severe pneumonia and things didn't look good. They had to remove the tube so that John would be comfortable but doing so might cause him to do worse or possibly die. We knew that it was time for John to make the decision about his path. We knew that with the tube in, John was miserable and in severe pain so the family made the difficult decision to put it into God's hands and remove the tube. As soon as the tube was removed, John seemed instantly more comfortable. We had some hope that he would possibly get better. We soon realized that John had all along been fighting on our behalf and it was as if he was asking permission to let go. Each of us in turn gave him that permission in our own way and Holly crawled into bed to hold him. The last word he said was, "Holly" and then he closed his eyes and finally gave up his fight about two hours later. He was comfortable at the end and seemed so peaceful. As we stood around him, we knew that John was no longer in pain and that he had continued his journey. John always trusted his faith and that helped us so much at the end. Knowing that John wasn't afraid to die and actually believed that there was so much more to his eternity was a great comfort to all of us. There aren't a lot of people who die surrounded by people who love them but I can tell you there was love in that room and I can tell you that we believe that John felt that love. He was not in pain and seemed more relaxed than he had been since June 2009. It was as if in his last breath he asked for us to help him let go and we did.

Holly wanted to speak at John's funeral. She felt so moved by the past couple of years events and wanted to share her experience. For those of you who were unable to attend the service, I am posting what she said here:

It has been said that the good Lord doesn’t give you more than you can handle and I stand before you today as proof that that is absolutely true.

Over the past couple of years I have learned a lot, cried a lot, worried constantly and almost always wondered what the end result of all of this would be or what John’s future held. Unfortunately, we have lost a man who has endeared himself to many and whom I will greatly miss for the rest of my days. I will miss his amazing zeal for life and of course…his sense of humor!

Today is about celebrating who John was and the life he lead and those he touched along the way.

John was an amazing person and a great husband. He was kind and gentle and loyal. We were married for 14 years and dated for 4 before that so I feel so incredibly blessed that I got to be a part of his life. He was my fishing buddy and I loved being on the back of his Harley. We loved spending Sundays sitting right there, enjoying church services. His sense of humor was amazing and he could make me laugh until I hurt but you already know that!

Who John was to me and to those who knew him best, was a man who was about the positive parts of life. He never judged others, was accepting of all, loved life and lived life to it’s absolute fullest. He loved God and was faithful to the point that he felt drawn to give to those around him in a way that exceeded generosity.
Even at one of his darkest moments after his father had passed away, he still felt compelled to thank God for the years that he did have with his dad. In a letter he wrote to speak at his father’s funeral, he said, “Why Lord have you taken my father at the young age of 59”…and we want to ask why God took John at the even younger age of 41. We all know that John gave, loved and lived each of those 41 years, and while to us, it seems so short and we are sad and missing him so much but we feel the blessing of the time we had knowing him.

I have asked God over and over what the purpose of this tragedy is. He has revealed many things to me and it has changed my heart for the better forever.

I’ve learned that life is precious, time flies and unspoken words remain unspoken.
Actions speak louder than words. I have learned that those who love me and love John, do so unconditionally and I know that an appreciation for those close to us is something that should be reiterated every single day.

Tell those close to you that you love them every day and think of ways to show them that love.

Possibly the biggest thing I’ve learned is to open my heart and appreciate the most difficult times in life. It’s shown me to love people today and love them tomorrow and forever regardless of how their lives change or how their health changes.
To try to express in words the level of appreciation I feel for everyone’s support over the past 787 days would fall short. I will live the rest of my days remembering the way that my family, friends and those I work with have supported us. We wouldn’t have made it emotionally if our family and friends hadn’t been there to support us and we certainly wouldn’t have made it emotionally or financially if my work environment had not been conducive to me caring for John at the level they have enabled me to do so. Your thoughts and prayers have sustained and provided comfort to me at the darkest times in ways I will never be able to express.

Specifically, I want to thank my dear sister Melanie for without her this last 2 years would have been impossible. Mel; your unwavering support, wisdom, dedication, and relentless time and energy have helped me beyond words. You constantly picked me up when I was down and carried me daily when I felt like I couldn't go on. I thank you from the bottom of my heart-my guardian twin angel.

John gave a Christmas card to his mother not long after his father passed away in 2001. In it he wrote, “Life is really non-existent as we know it …Life STARTS when we graduate to the next level.”

John graduated!!!

If each of us leaves here and does what John did, the world would be a better place. I brought some roses today and as you leave the church please feel free to take one and bring it to the cemetery. I had hoped that each of us could whisper a final wish, thought or prayer into the rose and place it on his casket at his graveside. Our hope is to blanket him in the love of our thoughts and prayers for eternity.

John would want each of you to know that he is astounded and appreciative of every single one of you. He would want you to know that he is in heaven and relied on his faith throughout his life. He would be amazed to be looking out over this fine group of people and knowing that they are here to show love and honor to his life. He would want to hug everyone here and tell you thank you because as much as you think he gave to you, he believed you gave him exponentially more.

At the end of every conversation, John would say, “God bless you”. It was as if he felt the need to share his faith and protect you in some way. I cannot think of a better way to honor John’s journey than to leave you with those words……God bless you.

God bless you, John…I love you.

Houston Northwest Baptist Church Corrected Address

Please note that the correct address for the church is:
19911 Tomball Parkway (SH 249)

Feel free to holler at me if you need help or better directions 713-314-7895

Funeral Arrangements

Today we made the arrangements for John's life celebration. They are as follows:

Tuesday, August 2, 2011 5:00pm-8:00pm Visitation:
Klein Funeral Home Northwest
9719 Wortham Boulevard
Houston, TX 77065-3420
(832) 678-3900

Wednesday August 3, 2011 10:00am Funeral:
Houston Northwest Baptist Church
19911 Texas 249, Houston
(281) 469-3389

Immediately following the service, we will then go to the cemetary via procession:
9712 Fm 2920 Rd
Tomball, Texas 77375
(281) 357-4401

In lieu of flowers, the Harris family is requesting that donations be made to:

Your local animal shelter (Houston S.P.C.A.)
http://www.houstonspca.org/site/PageServer?pagename=homepage_new

OR

The American Heart Association:
http://www.heart.org/HEARTORG/

July 29, 2011

I have the very sad duty to let you know that John David Harris passed away today. He was surrounded by those who love him and we are comforted in the knowledge that he is not in pain anymore.
I will be posting funeral arrangements and other details here as they become available.
Thanks as always for your unwavering love and prayers.

July 8, 2011

Over the past couple of weeks, John has remained in the hospital receiving treatment for pain and muscle spasms. He seems to become stable for a bit then he regresses into a lot of pain. His doctors have determined that one problem is related to his PEG tube or feeding tube. Unfortunately, many of John's medications must be crushed and given to him through this tube so it's viability is essential to his well-being. His doctors did a thorough flush of the tubing but determined that he needs a new tube.

Tomorrow, they will put a new PEG tube in and although it should be a straightforward procedure, there is always some concern about pain and discomfort during the procedure.

Thanks as always for your thoughts during this process.

June 30, 2011

After a rough few days, John has now been moved to the intermediate intensive care unit where he will receive some physical therapy and an evaluation of all of his medications to determine what might have caused the pain. We aren't sure when John will be released back to nursing care but we are grateful that he is in a good place where he is being well cared for.

Yesterday, they conducted a test to determine whether his baclofen pump was working properly and we were relieved to find out that it is. It appears that the cramping and severe pain were either a result of a dystonia episode or an imbalance in his medications.

Thanks so much for keeping us in your thoughts.

June 2011

A few weeks ago, John began experiencing some pain. He is unable to communicate where the pain radiates from but we knew that something was wrong because he wasn't sleeping well and his muscles were rigid and his face was strained. As the days went by, it got progressively worse and when medication changes didn't help, Holly made the difficult decision to take John to the hospital emergency room. An ambulance came to get him and Holly rode with him and unfortunately the ambulance company was unsure of where the hospital was (if you can believe that) so it took a couple of hours to get there instead of the usual 20 minutes which only exacerbated his pain.

Since that time, the hospital staff have been trying to figure out what exactly is going on and have been running tests to determine what might be causing the pain. Over the weekend, it became so severe that they moved him into intensive care to try to medically manage the pain better. Needless to say, it was a long few days with very little sleep for Holly as she was unable to leave him for fear that he would be unable to communicate his needs. Additionally, as many of you have probably experienced, some of the hospital staff weren't immediately helpful to John's needs and having an advocate there is imperative to make sure he gets medications/tube feedings on time and receives good care. Since he has been in the intensive care unit the staff have been great but those first couple of days were very trying with Holly providing the bulk of John's care and trying to comfort him. With a brain injury, medications seem to work differently and aren't as effective. This seems to be especially true with pain medications so it was a constant fight with nursing staff to give John enough to keep him comfortable. Finally, when he reached ICU, they were able to get him to a comfortable level but those first few days at the hospital were agonizing.

John has undergone a catscan, a brainscan, an mri and tomorrow they are going to do a dye test to make sure that his baclofen pump and leads are in place and doing what they are supposed to be doing. As we get more information, I will post it here. As always, thanks for keeping John in your thoughts.

Spring 2011

Over the past several months, there have been some changes with John's treatment and care. We have moved into a sort of plateau in terms of vast changes in John's condition. Since June, 2009 we have been in a state of constant flux and chaos. When we weren't worried about John's immediate condition, we were worried about his care and when we weren't worried about his care we were worried about where we would move him next. Now our worry is about day to day details and the future. In the past, we were worried about facilities and the immediate future so typically, I would go out and survey different facilities and interview staff and try to narrow it down to a few choices and approach Holly with the best choices so that she would not be overwhelmed with making that decision in addition to trying to care for John 24 hours a day. Since October 2010, John has been at a nursing care facility that we chose as a result of him being discharged from the absolute last rehabilitation facility in Galveston, Texas.

I must say that we have been exceptionally fortunate in that John has been in some of the finest facilities available. A great example is that of TIRR which is currently providing treatment to Congresswoman Gabrielle Giffords who was shot in during a public event in January. She is from Arizona and of all the facilities in the United States, her physicians felt that TIRR was the best rehabilitation option. We happen to live in a city which houses the most cutting edge treatments for several maladies including cancer (M.D. Anderson) and luckily the most cutting edge cardiac care and of course, brain injury treatment such as TIRR and we are exceptionally lucky that John received treatment there not once, but twice.

I wish I could report better news about John and his progress. The facility which was providing hyperbaric treatments has since closed unexpectedly. We had seen some changes in John's condition and we were so hopeful for such a long time that it was extremely difficult to accept that we needed to look for nursing care placement. To be fair, we kept John in rehabilitation facilities for as long as we possibly could and we have actually heard from several health care professions that it's amazing that we were able to avoid the inevitable nursing care as long as we did.

We have been fortunate that even though John is in a nursing home, it's a clean, well-staffed facility with people who care. We are also fortunate that John and Holly were able to save some money throughout their marriage which allowed for payment of this facility pending approval of medicaid. We are currently still waiting for Medicaid to give us a response to our application. This has been a tedious process which I had mentioned before and my only hope is that if you are reading this, you never have to go through it. That being said, if you do have to go through it, email me if you need help! Although we tried to pick the best of the nursing care options available, John's family does not feel safe leaving him without extra help during the day and sometimes at night so they have made the decision to hire additional private help. Nursing care facilities aren't used to patients like John. The activities and care are geared toward much older, much less active residents. John is 41 years old and there aren't other residents his age at facility where he currently lives and, in fact, a lot of facilities won't take residents under the age of 55. We have consistently been correctly lead to facilities which have been perfect for John at the perfect time. I wish there were more options available in terms of advocacy but I believe that in this process, we can each be a bit more like John in terms of helping others and we hope to be a navigational option to others who might be going through a similar situation.

On the medicaid front...we have been submitting documents and resubmitting documents in the hope that John might get approved for medicaid and therefore relieve some financial stress from the family and set out some future goals to provide for his care for now and forever. While we still hope for miraculous recovery on a daily basis, we must maintain a modicum of realism and that means planning for every possible scenario. We have recently received great news in that we are close to the end of the medicaid approval process. This will help with nursing care costs as well as medication costs. John is reliant upon specific 24 hour care and medication as well as his feeding tube nutrition and we are hopeful that it will be approved soon and somewhat retroactive.

I want to apologize for not stating more clearly earlier that I wanted to make the blog a bit less active. I think with the amount of paperwork involved with medicaid and all of us trying to work and go about our day to day business, I have forgotten just how important it is to others to keep up with John's going's on. What I can say is that as major life events happen with John, you will read about them here first. I wish to also say from the bottom of my heart...and on behalf of all of John's family, we appreciate every thought, every prayer and every good wish you send our way. June 2, 2011 marks the 2 year anniversary of John's heart attack and the day that our lives changed inexorably. One thing that hasn't changed is the consistent love and support we feel from those who love John. Thank you from the bottom of our collective hearts.

Recent happenings with John!

Over the past couple of months, John has begun hyperbaric medicine treatments. The simple explanation to this is that John is placed in a chamber which is capable of delivering pressurized oxygen to the body. This is a painless procedure and John is able to watch t.v. and communicate throughout each of the treatments. Over the years, this type of therapy has been used for wound treatment and decompression treatment in SCUBA diving accidents and there is some research which supports it's use as a way to help the brain heal as well. Since John suffers from an anoxic brain injury, the theory is that it will help his brain heal faster and also hopefully reverse at least a portion of the symptoms of the dystonia. Since he began treatments, his hands have relaxed a bit and his speech is somewhat clearer and he is able to hold his head up for longer periods of time. Only time will tell how much impact this treatment will have but John's family remains fully committed to trying any and all treatments which might help him get better. He will continue going for two treatments daily and will continue to do so for the next couple of months.

One of the main battles we have begun fighting on John's behalf is that of trying to get him on Medicaid. Up until this point, John's insurance has been paying for his treatment but his recent treatment is not covered and needless to say, the cost for his care is mounting up by the day. We have consistently fought for John to have the best care possible and the only way for this to continue is for him to get on Medicaid and hopefully some of his housing and medication costs will be deferred. Applying for Medicaid is a process that is stressful, tedious and extremely difficult and I can honestly say from recent experience that graduate school was easier! We have essentially had to recreate every financial move made prior to and since John's heart attack and while John was fairly organized in terms of keeping documentation, it is a time consuming and arduous process. We hope to have his application completed and submitted soon and then we will begin the wait to see whether he is approved or not.

We continue to receive amazing support from everyone who knows John and we would like to thank each of you for your unwavering support and prayers.