October 2010

The 4th annual Heroes for Harris softball tournament was held on Saturday, October 16 and the weather could not have been more beautiful. Special thanks to all who participated and especially those who volunteered their Saturday to make this tournament happen. There were a lot of folks involved with getting the t-shirts and raffle tickets printed, securing the fields of play and organizing teams and volunteering to ump games or do whatever was needed to make this tournament a day to remember. John would have been awestruck at the involvement this tourney generated and I'm quite sure he would have been even more proud to be a Spring Branch employee. Thanks so much to everyone who came out to play and there are still t-shirts and raffle tickets for purchase so email me if you're interested. The raffle won't be held until mid-November so you have some time to buy some. Prizes this year will be some awesome gift cards.

John was moved once again this week. Some people have asked why we move John so frequently so I thought I'd explain. With this type of injury, different levels of care have to be justified. At each step of the way, staff at the facilities must let his insurance provider know of John's improvements and set goals in order for him to stay at a given facility past 30 days. Throughout his journey, John has shown marked improvement and it is actually incredible that given what he has been through that he was able to survive, much less thrive on any level. Some of the facilities have been more therapeutic intensive and others have been more care intensive and we have had to justify his level of care at each stretch. John has been to the very best rehabilitation facilities and been looked at and worked with by the very best professionals available and he has worked hard. He has been through more physical therapy, speech therapy and occupational therapy than most patients get and that has been because of almost constant advocacy by his family.

I will tell you that figuring out the best steps for John has been both nerve
racking and confusing and it is only through sheer luck that we have been able to come across a kind professional here and there either through the facility staff or insurance (Blue Cross Blue Shield) that we have been able to provide this level of care for him. There are angels in this industry and in every aspect of life and through John's faith and perseverance, they have been revealed to us and we have truly been blessed beyond imagination. Each time we began to feel defeated, a new path would reveal itself or new information would be given to us we would have guidance and a sense of calm.

It is the same with this move. John has utilized his intensive therapy days and although we plan to continue his therapeutic regime, it will come at a monetary cost and will therefore be less frequent. John is at a place where he is stabilized and is now at a skilled nursing and rehabilitation facility in North Houston. He is close to family so that he can be checked on daily and settling in with the hope that allowing him a consistent environment and staff will allow him to blossom and thrive even more. As with previous moves, we are nervous and hopeful but even more so this time because this is a more permanent placement. Over the next few weeks, we will be working closely with staff and them with us so that they can learn all about John and his nuances and so that he can begin to feel comfortable and safe enough to continue his journey.

Hello Everyone!
I thought you might like to see the video from last years softball tournament. It was a lot of fun and we still need more folks to play so give me a holler if your interested!
2009 Heroes for Harris Video

Heroes for Harris T-shirts

Hello all,
Once again, John's coworkers have outdone themselves! Here is the t-shirt design and link for the order form:

T-Shirt Order Form

For those of you who live out of town or might not be a able to get to the softball tournament but would like to purchase a t-shirt, just print off the order form and send along with your selections and check to:

Melanie Moynahan
10415 Red Slate Lane,
Houston, TX 77095

If you would like the shirts mailed to you please include $4.00 per shirt and I will mail them to you.

Please make checks payable to:
Spring Branch Health Fitness Teachers Association

The tournament will be held on October 16, 2010 at several baseball fields in the Spring Branch area and I will post that information as it becomes available. Also, I will be updating information on raffle tickets soon. Please email me with any questions and I will get back to you as soon as possible!

Also, we are still forming teams so holler if you want to play. To enter a team, the cost is $150 or if you want to play but don't have a team, please email me and we will try to match you up.

TEAMS FORMING NOW!!

John helped start the softball tournament for the SBHFTA but they have renamed it as "Heroes For Harris” in honor of John “Coach.” The Spring Branch Health and Fitness Teachers Association is wanting to use this tournament to fund raise for John once again and soon I will have details about t-shirt sales and raffle ticket purchase information. We cannot express how much we appreciate them doing this for John once again. Their kindness and generosity and love for John is amazing and we are so grateful.

We need more teams for this tournament. Teams consist of 5 gals and 5 guys and last year this tournament was a total blast! Also, I am entering the Melonballers once again and need some guys for my team so if you are a single or looking for a team, email me and we will try to hook you up. There is a team entry fee which will be decided once the brackets are completed.
If you have a softball team you want to enter into this years tournament please email me at:
melanie.moynahan@gmail.com

SAVE THE DATE-OCTOBER 16, 2010

Hello Everyone. It's hard to believe it's been a year but on October 16, 2010, John's school district will once again be holding a softball tournament and raffle. Please let me know if you are interested in participating and stay tuned for details! There will also be a new t-shirt this year to honor John and keep us looking sharp on the ball field and beyond. I will post details here as I receive them.

September 2010

A few weeks ago, John was moved to an intermediate facility. As always, we were very apprehensive about the move because each time John is moved it takes a bit for him to become acclimated to his surroundings and it's hard for us to see him struggle. The level of rehabilitation TIRR provides is meant to be short-term and while we knew that another move was inevitable we were just hoping that it would be a good one.

Throughout John's illness, we have been inspired and amazed that at each turn, we end up in great places with great staff and people who truly want to help John and this move has proven to be exactly the same. We are blessed once again with a beautiful and much smaller facility where John receives excellent care and is surrounded by staff who truly show an interest in helping him get better. This is also a short-term stay and soon we will begin the arduous task of looking at and deciding on long-term care for John. He still has good days and bad days and endears himself to all of those around him. Although at times it is hard for him to verbalize his feelings, his energy remains positive and his attitude is good. We feel as though this move has been a breath of fresh air and it is always good to have new professionals evaluating John for anything the previous facilities might have missed.

His newest physician mentioned to me that once you've treated one brain injured patient you've treated one brain injured patient. I found this statement truly profound in it's simplicity. Although each patient may exhibit certain characteristics specific for brain injury diagnosis, the paths leading them to the injury, type of injury etc. are all so different that it would be impossible to treat them the same. It is also true that being able to predict what might happen in the future is impossible because of the same reasons. We remain hopeful and so grateful that each of you have shown such an interest in, and love for John and his family.

August 3, 2010

Over the past 14 months, John has participated in many different types of therapy. At TIRR, his therapists have been both creative and in many instances ingenious in their approach to finding activities to specifically help John. They recently asked Hudd to bring in a Kayak that John used at the coast. The intention was to help John with balance and core strength as well as help him with strength and coordination. John absolutely loved it and it was a nice change of pace for him.

In the next few weeks, we should be getting more information about where John may go next. Although TIRR is great, it's not a long-term solution because it is considered intensive therapy and patients usually stay there until they improve enough to leave or plateau so that the therapy isn't quite as effective. Our hope is that John will be eligible to go to an intermediate facility like Mentis again. Staving off the effects of Dystonia is a constant battle which requires a lot of therapy so him being accepted at a facility like Mentis would be great.

I recently was walking/jogging around the pond near John and Holly's house and I called to ask Holly how far around it is. She mentioned that when they first moved in, John went to the pond with a wheel measuring device and measured the diameter of the pond carefully marking 1/8 mile marks in blue paint circles. Every time I walk around the pond now I look for the markers and although at first, some of them were hard to find...they are there. It seems that at this point, John is continuing to measure and mark blue circles in his life and while they may not measured in miles or portions of miles, they are certainly measured and worthy of a feeling of accomplishment. Maybe his blue circles are at such moments as a memory or taking steps or speaking or sitting in a kayak. For me, when I walk around the pond I have an instant reminder of John and when I get tired of jogging I simply look for that next blue dot and keep on going.

July 16, 2010

On Wednesday, John had the nerve block procedure done on his right side. Holly and Hudd went with him and he did fairly well throughout the procedure and into the evening. Sometimes John becomes very anxious and the only thing that seems to calm him is Holly. He had an episode of this severe anxiety late Wednesday evening so Holly returned to TIRR to comfort him. We don't know if this is his brain trying to figure everything out or what it is that upsets him but it can be scary because his blood pressure gets high and he becomes very distraught. Fortunately, after about an hour he was able to get to sleep and he seemed to be fine the next morning and since.

We won't know how well the nerve block worked for a few weeks. We should begin to see some differences almost immediately but for the long term it remains to be seen how this procedure will help him in his recovery and therapy sessions. In coming weeks, his physicians will do the other side and hopefully this will really help John's progress.

July 7, 2010

Over the past few weeks, Dystonia has gotten the better of John. His hands are cramped up and physicians have made braces for them to help keep his fingers outstretched and to help keep them more limber and continues to have difficulty swallowing and speaking. He was recently evaluated for a procedure called a nerve block which will hopefully alleviate this cramping in his hands and it was decided that John is a great candidate for this procedure. Doctors will do the block on one side in one procedure and then on the other side about a week later. They have to space it out because there is some concern about puncturing his lung and if this happens, he will need time to heal. This is a precaution and we have been told that they have never had a punctured lung but given John's medical history, they just don't want to take a chance at further injury.

The nerve block can be temporary in cases where the patient needs temporary relief from pain or it can be permanent for folks like John who need long-term help. Essentially, the nerve block changes the way that your brain perceives pain and will hopefully allow John to relax his hands a bit more and provide him the ability to use his hands more easily. He has great difficulty at this point gripping items and moving his fingers individually and the hope is that it will change after this procedure. This is an out-patient procedure and should not be painful for John.

John has been extended at TIRR through the end of July which means that he is showing some improvement in the big scheme of things and it's a great thing because he receives constant rehabilitative activities while at TIRR. His days are comprised of physical therapy, speech therapy, memory therapy and life skills. He has also been riding a specialized bicycle which utilizes his hands (I hope to post a picture of this soon). At this point, we aren't certain where John will go after TIRR however we are grateful for the time he is spending there.

In a side note, Holly wishes to thank everyone for the continued support. She recently received some donations toward John's care and is constantly overwhelmed by the love and encouragement she and John have been blessed with throughout this journey. The paypal link on this blog is active and goes directly toward John's care as well. There are no words to express the level of gratitude and humility that this situation has evoked and we are consistently amazed by the outpouring of help we have received. Thanks, as always for keeping John in your thoughts and prayers as he continues his healing process.

June 2, 2010...one year later

It is almost hard to believe but as I type this it's been exactly a year since John had a heart attack inexorably changing his life and the lives of those who know and love him forever. In some respects, this 365 days has dragged by without knowing much of what might happen next, and at other times it seems like it has simply been a snippet in time. While it is easy to feel that you are the center of the universe when things are bad, this situation has shown us all that nothing is further from the truth. We are all on rafts floating in God's ocean and although we might think we know where we will end up when we get to shore, it's always a few inches or in this case, a few feet from what we might have expected.

This time last year, John was finishing up his last few days of school and making plans for lots of fishing and golf. He was also scheduled to go see his doctor for a stress test and physical which might have caught this tiny clot in his bloodstream but he didn't make it to that appointment. While running a quick errand, he collapsed in a busy parking lot and everything from then on changed for John...and for us.

For the first several weeks, we waited anxiously to see whether John would even survive and lo and behold, he started showing progress. First opening his eyes then blinking his eyes once for yes and two for no and then talking. He progressed so much in those first few months that we had no doubt that he might be able to get back to where he was pre-heart attack.

Over these last few months, John has endured surgeries, medication changes, and environmental changes. He has done so with grace and strength. Although his memory (particularly his short term memory) remains sketchy at times, what hasn't wavered is the fact that he rarely fails to tell those close to him that he loves them. Maybe we don't have the same John as before, but this is our John too. His progress undulates and it is easy to get discouraged however the one thing we steadfastly hold onto is what we were told in the beginning which is that it takes approximately two years to evaluate how much people with a brain injury will improve. He has had setbacks with the surgeries and the onset of dystonia but to sit back and really think about all that has happened in the past year and not feel gratitude on all levels would make us negligent and would cheapen all the progress John has made.

Our lives have changed. Maybe it's the fear of becoming incapacitated or unable to do tell those close to us how we feel or maybe it's a shift in our life paradigm as a result of this situation. As we search for the meaning or gift we are supposed to see in all of this, I can tell you that maybe the greatest thing I have learned is the utmost appreciation for each day. I strive to not take even the littlest of things for granted and I am grateful for those who love me. We have been shown who our friends are and who our focus should be on. We have mended family strains and pulled together as a team. We have cared for John in a way that a lot of families would be unable and we have been blessed with a huge outpouring of love and support from all of you. While I miss my brother in law as he was, I embrace him how he is and wish that for everyone who loves him.

May 23, 2010

Recently, John's therapists had him outside playing some softball:




Over the past few weeks, John has continued to struggle with swallowing and speech. There are some days that he can talk and seems alert and then there are days when he is only able to mumble and is unable to speak clearly. Walking is always difficult however he has had a few days that he has been able to do more walking with less assistance. We have been told that this is most likely because of the dystonia which has become a huge problem in John's recovery process.

It is obvious that this progressive disease will be a constant battle in his life and there will be times when it is worse than others. The biggest thing is that it is progressive which means that there is no good ultimate outcome and in the meantime, we simply treat it with medications and hopefully force it into some sort of remission temporarily. I should mention that there are times when John is more alert and able to say words, etc. however there are also days when he is anxiety ridden and unable to relax. It seems as though there is an internal battle between the brain continuing to wake up and the physicality of the muscle rigidity. Our hope is that this is not painful for John and we make every effort to pay close attention for any cues which might indicate pain.

A couple of weeks back, John was due to be released from TIRR because he was not improving enough according to insurance standards. I am happy to report that last week, John did show some improvement in therapy sessions and as such has been extended to mid-June. This is good because TIRR provides a more intense level of treatment for John and gives him the best hope for regaining strength and mobility. The insurance process is complex, time consuming and extremely confusing. There isn't a day which passes that John and Holly do not receive a pile of letters from physicians and insurance folks and going through them and trying to decipher what is or isn't covered and more importantly what will be covered in the future is arduous and scary. While John did everything in his power (i.e. long term insurance) to protect himself, we are told everywhere we go just how unique John's situation is. A lot of facilities won't even take John just because he isn't old enough or because he requires a high level of care and most won't take insurance for any appreciable amount of time. Hopefully, you never have to experience this daily struggle but I wanted to mention it as a reminder to folks about what can happen and the importance of planning ahead.

Holly wanted to mention again that she never ceases being grateful for the constant outpouring of support from John's co-workers, friends, and well-wishers. John is loved and although we knew that before all this happened, we could never have imagined just how much he is loved! Thanks so much for your prayers and support.

Tuesday May 4, 2010

Over the weekend, I took my new puppy, Ellie Mae to see John. She is an Australian Blue Heeler and as soon as we walked into his room his face lit up and he kept telling me how cute she is! She gave him lots of puppy kisses and a few nibbles and John beamed the entire time.

John is currently at TIRR and has good days and bad days but has resumed his therapy. His physicians are still trying to get his Baclofen pump regulated to deliver the correct amount of medicine to hopefully improve his muscle rigidity and his swallowing.

Sunday, April 25, 2010

John's friend Candy brought Moonlight by for a visit!





In the past week or so, John has continued his recuperation process at TIRR. Therapists have structured his rehab so that it will hopefully not interfere with the leads from his Baclofen pump. They have also begun to adjust the amount of Baclofen which is released from the pump. The idea is that they adjust it and then see how John does and then adjust it again and so on until they obtain the perfect amount for him. It's not an exact science and at this point they have steadily increased it and will continue to tweak it as the weeks pass. John's speech and swallowing have also improved a bit and we are encouraged because it is somewhat better than it was prior to the Baclofen pump placement. Obviously, we are hoping for huge changes with the pump but at this point, it's the little improvements which keep us grateful and hopeful.

In the big picture, his condition has deteriorated over the past few months. I wish it were better news but the fact is that I wish to portray an honest account of what is going on. Essentially, the progress we are making at this point is remedial and although we are happy that he is feeling better, John has had quite a few setbacks and for us to begin gaining ground again will be a wonderful and precious thing.

I have tried to help out with things around John and Holly's house while he has been hospitalized and I recently had something special happen that I wanted to share. I was in the attic about to change their air conditioning filter. This is something I hadn't done before so I truly had no clue how to do it but I knew it was in the attic so I pulled down the ladder, grabbed the new filter and headed up! So, I was looking around with my mini flashlight to figure out where the thing was and how to change it and in the back corner of the attic was a pair of pliers and a screwdriver right below where the filter goes. It was as if John left me this huge clue and the perfect tools to get the job done just in case, and it really choked me up. So, there I was...up in the attic sweating and crying and missing John more than ever. It's not that he is gone of course, he is simply in a different place in his life. The fact that he is so organized in all aspects of his life reminds me of how he has always done so much for others and never wanted to be a bother. We have had many other incidents similar to this one but it was simply so unexpected that it almost felt as though John were right there helping me change that filter. If he had been, he probably wouldn't have let me up that ladder because he knows how damn clumsy I am! I am guessing that he has left many of these clues throughout his life. Maybe they aren't as tangible and maybe they are simply something he has said or done but I would bet that each of us has our own "John reminders". I could only hope that if something catastrophic were to happen to me, I would have my affairs in order enough that those close to me wouldn't have to go through too much trouble.

Tuesday, April 20, 2010

Since the last blog posting, John unfortunately had to undergo yet another surgery. The Baclofen pump leads once again moved and had to be repositioned. His surgeon said that this rarely happens once...much less twice. We were very discouraged that John had to have another surgery but I am happy to report that the leads were replaced and as of today, the pump is functioning properly and John is recuperating. John continues to have some difficulty swallowing however with the placement of the feeding tube, he is receiving adequate nutrition and fluids. He is back at TIRR and as soon as he has healed from this surgery he will hopefully resume daily rehabilitation.

Over the past weeks, John has had a total of 5 surgeries. Two to replace the Baclofen leads, one to place the feeding tube and one to curtail internal bleeding. This has been a rough time for him and since he has a brain injury, someone has to be with him in the hospital 24 hours per day to answer questions on his behalf and make sure that he receives exceptional care.

This has been an emotional roller coaster as you might imagine. Each time we start to feel that John is recovering and may begin improving there has been a setback. We are hopeful that at this point there will be no more surgical procedures and he can continue on his path to recover strength and gain some weight. His overall health remains good in that his kidneys are functioning normally, his heart is strong and he is as comfortable as possible. At some point soon, John will be released from TIRR and will most likely return to Mentis to continue with his rehabilitation and recuperation. His physicians will also continue to monitor his medications in an effort to give him every available opportunity to thrive regardless of his diagnosis. While the future is uncertain, what is certain is that John is still in the window of time which should allow for improvement and the eventual progress toward good quality of life and comfort. What is also certain is that John has many folks praying for him constantly and so many who love him. The continued support exceeds our wildest expectations and we wish to thank everyone for their well-wishes, thoughts and prayers.

April 11, 2010

Several weeks ago, John had surgery to replace the Baclofen pump leads. Up to that point he had been having some difficulty swallowing and so eating and drinking were arduous. It was decided that physicians would place a PEG feeding tube in John's abdominal area to assist him in getting the appropriate amount of fluids and nutrition. This was an outpatient procedure performed at St. Joseph's hospital.

John returned to TIRR but after a few days, John's physicians noticed that his hemoglobin counts were steadily declining. At first, they believed that his body was simply recovering from two surgeries within weeks however it soon became apparent that there was something else wrong. They continued to test his blood and continue his medications but the hemoglobin numbers kept getting worse to the point that John required several blood transfusions throughout the weekend and we were waiting to see whether John would need further surgery. As it turns out, declining hemoglobin numbers can be a clear indication of internal bleeding and we were told that if it got worse, John would need surgery to correct it.

Shortly thereafter, John was taken to St. Joseph's hospital and was immediately taken into endoscopy surgery where his doctor quickly found the source of the bleeding and corrected it. John stayed in the hospital for several days for monitoring and to recuperate and receive blood and placelets to help him get his strength back and raise his hemoglobin levels. Fortunately, it worked. John is now back at TIRR and will hopefully keep getting stronger and will resume therapy this week.

As far as John's progress and current status, what I can tell you is that his body has undergone a tremendous amount of stress and it is difficult at this point to guage where he is in his recovery because he has been through so much in the past 4 weeks. Since he has been at TIRR, he has been unable to fully utilize therapeutic resources as he failed to reach a level of stability which would allow him to do the things necessary to regain his strength. Each of the times he would go through surgery, we would hope that he would recover quickly and be able to resume therapy and continue on his path to recovery however, each time there have been huge obstacles. I will tell you that John has not been in pain and has had constant care from family and medical personnel.

This situation was critical and was not anything that was expected. Holly wanted to mention that if she has been a bit unavailable as of late, it is because she has been at the hospital with John. As always, we simply cannot express enough how much your thoughts and prayers mean to us.