May 11, 2010

Jessi and I are back tonight and as luck would have it, we forgot her "binky" in Denver. In years past this would have been a tragic event requiring a full-blown tactical call out, however she is maturing and was able to settle in tonight next to daddy with just a stuffed cow.

Garrett continues to have good days and we feel so very blessed to see him happy. Kathy and I even think this little distraction has changed his personality a bit. He is less crabby with little inconveniences and seems to take things with a much more "water of a duck's back" kind of response. I'm so proud of him. He just doesn't go through life with his lip stuck out feeling sorry for himself.

The biggest daily bump right now is sleep, or lack-there-of. The last few nights I've had to wake Garrett to stop his nightmares. He's really having a lot of them again and they always have to do with the hospital. They’ll get more intense the closer to the biopsy we get. I know they don't hurt him physically, but it breaks my heart to watch and listen as he goes through terrible dreams, calling out, crying and kicking the covers off. Little kids should be dreaming about playing baseball and other such fun things. He had just gotten to where he was starting to go to sleep easily and rest peacefully. I hope and pray we can overcome this again.

After spending the best part of the morning with Kathy going over a new crop of hospital bills and trying to figure out how to rig a lottery win or sell my body to science :-), we settled in and spent a few more hours together, just the family, before Jessi and I had to leave again. I know it’s not that big of a deal because lots of families have to spend time apart. But this family is mine and I think they’ve had their share of uneasy separations.

Driving home tonight, Jessi fell fast asleep in the back seat of the pickup and I got to praying and thinking, as I often do on these trips, about the past 10+ years. Just for giggles, I put pencil to paper in my head and figure we’ve driven more than 72,000 miles back and forth. How blessed are we that we’ve never had a wreck? Oh, in that first year or so when I was driving to and from work and our little apartment in Denver every night, I woke up in the ditch a time or two, but my guardian angels always kept the rubber on the asphalt. We’ve been faced with, and beaten, all the odds time and time again. My little tribe of warriors are pretty daggone hardy and God continues to smile on us every mile of the journey.

As Jessi and I said our prayers tonight, I remembered what Jesus told us in Matthew…”Whenever two or more are gathered in my name, there am I in the midst of them”. As parents, we’re called to lead our children to holiness and the only way to do that, to sanctify this mission as I see it, is to keep Christ in our daily walk together. I’m grateful that He has allowed me to walk this trail with my family, with Him keeping us safe and knocking the edge off of our fears. I honestly don’t know how anyone can take on these challenges without Him.

JD

May 10, 2010

Garrett had a really good day again! We spent several hours at the hospital early then had the obligatory hours-long wait for a call late this afternoon to give us the results of his tests. Everything is just where it should be at this point and his echo again showed some improvement. The significance of him getting stronger right now will be telling when we get to biopsy.

During the first few days in this chapter of the journey, Garrett’s heart beat so hard it literally would rock his whole body side to side. Nurses didn’t need to hold his wrist to check his pulse; they could watch the arteries pulse in his neck. Things are certainly a lot better now. As I lay next to Garrett tonight, I can still feel his heartbeat, but it’s not nearly as hard or animated.

Normally on Mondays after the appointment, I head back “home” so I can get ready for work again. But this time was different. Last week when I left, Garrett was upset and told me “daddy, you always seem to leave when I’m feeling good”. That comment stayed with me all week and I decided that if he was still feeling good after his appointment, I would stay one more day just to be with him and celebrate. Fortunately my bosses have allowed me the flexibility to do just that and I have a great team of folks who support me. So tonight we were in our basement hide-a-way and had a “family night” for the first time since he got sick.

We decided to watch a movie and picked “Radio”. While the story doesn’t mimic our journey, it did drive a point home. In the movie, Coach Jones’ commitment to an exceptional young man drove him to choose between the job he loved and a boy who needed him. As you can imagine, he chose to mentor Radio and walk away from coaching full-time.

While it’s not realistic in my world, it reaffirmed my desire and commitment to take these extra days once in a while and enjoy Garrett, mentoring him as a daddy should, when he’s not feeling so sick and not having to leave him as soon as he is “feeling good”.

Too often in our worlds we confuse “needs” and “wants”. Because of the hand that’s been dealt, we have spent too much time living apart in different towns over the years. The disruption in daily life seems almost normal in a way. We spend our time living out of a suitcase, trying to find continuity as a family unit while surrounded by others; trying to keep up with bills here when all the mail goes there; trying to find 10 minutes to be a married couple and have a conversation when we don’t have anywhere we can call “our own space” to do so; and all the while trying to build a sense of normalcy that every family unit needs.

I’m not going to pull a Coach Jones and quit my job, but I am trying to keep my “needs” and “wants” lined out if possible. Right now, my children need me to be close, Kathy needs her husband to lean on and I need to be with them to keep my sanity.

Because of Garrett’s health problems, I’ve spent more time with my kids than most dads get to at this stage in their life. Granted the time hasn’t always been fun time, but any time with your kids is time well spent. Before he fell asleep tonight Garrett said “daddy, I can’t wait until we can go home”. Well I got news for him, “home” is where the heart is, and mine is right here.

Have a very blessed day.

JD

Mother's Day 2010

Happy Mother's Day!

I'm dedicating this entry to all mothers, with particular attention to one very special mother, of one very special little boy. A few weeks ago, Garrett asked "mommy" what she wanted for Mother's Day. With her voice cracking, she told him that all she wanted was for him to feel better. She got her wish. Garrett is really feeling good compared to where he was just a short time ago. He’s had several good days in a row now and we’re praying for many more to come.

After spending some days away from the family, I'm finally back in the arms of those who bring me sunshine. Garrett and Jessi curled up with me tonight after playing all evening and getting everything out of the day that they could. Just before he fell asleep, Garrett tucked in close and said he's really praying that his biopsy with score a "zero". With just a couple weeks to go before the procedure, he's starting to worry and wonder. But he's been steadily feeling stronger and looking better, too, and these signs are so important especially in light of the gallop that has returned.

The biopsy will tell us so much more than we can know without it. Sometimes a recipient can be asymptomatic until a rejection is out of control. That's why the frequent check ups now. What we will soon know will be revealed by a standardized 0-5 scale for interpreting the biopsy results from Garrett's transplanted heart tissue. Acute rejection is a common problem after heart transplantation, particularly early after transplantation, but this far out it causes more concern. Most cases are due to cellular rejection but antibody-mediated rejection can happen and is a less well understood, less easily diagnosed and potentially more dangerous. The better he feels, the stronger he gets, the better he can fight any problems that might crop up. For now though, he's feeling great and that's such a positive sign. And it's the perfect Mother's day gift for Kathy. She’s a momma who deserves a beautiful day with her healthy, happy, beautiful children.

I think God made spring just for mothers. He chose a very blessed and special mother to give birth to our Savior, when He could have chosen any method to put Christ among us. God knew that we needed that incredible mother connection to bring His whole Light to bare. That birth was the beginning of our salvation. Jesus' birth made it possible for Him to walk among us and complete the mission that would make everything new again. This event is celebrated every spring with Easter, when the flowers bloom, all the animals bare their young and new life abounds. None of it is possible without mothers. So at a time when we feel better because the winter winds are gone and the warm sun has returned, we celebrate a time for all mothers. They are forever connected with new life.

In Garrett's case, his momma knew before he was born that he was sick. His birthday arrived with a combination of joy, pain and terror. The next 10 years have been filled with challenges and heartache, the fear of the unknown future, and the tremendous joys that only a mother can know. She's had a baby girl who was born 2 1/2 months early and spent the first month of her life in the hospital. She never got to bring a baby home from the hospital the “normal” way, but she’s never felt sorry for herself. She’s always just been so grateful for the incredible gift of giving life that God allows only mothers to know.

Your momma has stayed by your side when you’re sick. She’s kissed your “owies”, rocked you, sang to you, read to you, washed your clothes, tucked you in to bed, cooked for you, comforted you when you had your first broken heart, packed you to countless games, rodeos, parties, parades, school events, church outings and doctor visits. All she’s ever asked is for your love and respect. Oh, she’s asked you to clean your room and help with the dishes once in a while, but she’d have given you her last dime, her last scrap of food and her only jacket. She’d give you her very life, because she loves you that much.

Give her a hug today. She doesn’t need flowers, cards, gifts or a once-a-year house cleaning. Those are nice, but she really just wants your unconditional love, because that’s what she’s given you…..all these years.

Happy Mother’s Day. Every day should be so special.

JD

May 6, 2010

Checkup days are always preceded with anticipation and typically followed by exhilaration, trepidation, disappointment or relief. Sometimes it’s a surplus combination of all the above. Today was one of those days. Garrett has his definite “favorites” when it comes to nurses at TCH. When it comes to drawing blood, Chantelle wins hands-down. His fingers and arms are so laden with scar tissue that it takes just the right touch to open the wound enough to get a good supply for the sample without having to conduct second, third or even fourth attempts and subsequent needle jabs. The fact that she always brings a stack of baseball cards doesn’t seem to hurt, either. She happened to be off today and Garrett was not happy. She didn’t get clearance from him before scheduling her leave time.

The rest of the visit seemed to go without issue. He is now back at the same weight he was a month ago, his lungs, liver and kidneys seem to be working pretty well and his heart rate was in the 120’s. They said he looks good and is improving. By 5pm we hadn’t heard back on the echo report or lab results. That makes for a long day waiting for news. I’ve always felt that no news is good news, but mommy tends to think they're trying to build up their vocabulary and guts to tell us what went wrong. We were both right.

The echo showed that Garrett’s heart function has improved since Monday, which is great! But they also found a “gallop” rhythm. They haven’t heard that since he first came in when the rejection was at its peak and his heart rate was high. It stayed for several days then went away. The gallop rhythm means that instead of two distinct heart sounds, he’s got three or four. When combined with an accelerated heart rate, it could indicate potential heart failure. But it could also be just something the heart is doing on its own as it heals. For now, all we can do is ride out the next several days and see if he continues to feel better or starts showing signs of insufficient blood supply.

For now though, Garrett feels so much better than he did a few weeks or even days ago. Again, trying to figure out how he’ll be next week is like trying to herd cats. This will take time, lots of patience and a gentle approach with the ability to adapt quickly if needed. We just have to put the “what ifs” aside and simply enjoy his good days of victory.

I got to chatting with a friend of mine today about the time we've spent in the hospital over the years. It kind of goes like this: In October of 1994 I found myself in a bit of a predicament. I was laying out in a pasture by myself, about a quarter mile from a house, with my right leg pointing off toward left field and blood leaking out the top of my boot. A rope horse of mine had a momentary loss of anything resembling sanity and showed his new shoes to the clouds. Problem was, I happened to be in the middle of him at the time.

That little hickup commenced what would be an 18 day hospital stay complete with obligatory accouterments. Nice staff and all, but I made my mind up then and there that I would make a point to discontinue residing in such facilities in the future. Some 15+ years later, I've determined that God has quite the sense of humor. In the last 10 years alone, I've lost track of the number of nights we’ve spent feigning sleep in a hospital recliner next to Garrett’s bed. Looking back, I find it much easier to be the one plugged in to the tubes instead of keeping prayerful vigil at the bedside of a sick child. Worry seems to drain me more than injury.

In Garrett’s first year of life alone, he spent more than four months in the hospital. Over the years, we’ve celebrated holidays, birthdays, anniversaries and a 1st communion in a hospital room. We’ve laughed, cried, played, argued and even danced in there. We’ve watched countless baseball games, rodeos, football, movies and Dora the Explorer. We’ve studied, prayed, had church, authored letters and memos, work documents and thank you cards. We’ve experienced elation, fear, panic, dread, anxiety, appreciation, anger, joy and calm. We’ve made, and lost, new friends. We’ve shared in their joys and comforted them in their sorrows. We’ve been blessed with opportunities we wouldn’t otherwise have had because of this journey. And it’s all because God needs Garrett’s journey to help Him do something special. We don’t know what that is, but we’re keep praying for the grace to accept it.

If some part of this little expedition can be used to help someone, somewhere, then we’re hopeful our participation is adequate.

Still, I'd prefer a log cabin in the woods somewhere.

Be blessed. We are!

JD

May 5, 2010

What a happy Cinco De Mayo! Garrett had yet another good day today. He felt good all day and his heart rate dropped into the 130's today and stayed there. He's been a little more tired today, but I think it's because we had a pretty big day yesterday. He was pretty exited when I spoke to him tonight. He got a very special visit and couldn't wait to tell me who came to see him.

Two years ago, Garrett got his 3rd heart during his second transplant surgery. His heart came from Darren Collins, and Darren's family has become as our own. He has developed an especially wonderful relationship with Darren's younger brother, Warren. Well, they were on their way to Cheyenne to visit Warren's older sister and dropped in on Garrett. The boys played catch in the yard and generally caught up. Garrett truly loves his "brother from another mother", and Warren shares that feeling.

Through the tragedy of losing Darren, Warren gained Garrett and Garrett gained Warren and all the girls! I've spoken often of God's tremendous love for us and never wanting us to be in pain. I honestly believe that in His infinite wisdom and perfect plan, our Creator does not allow something terrible to happen unless some good will come from it somewhere. Many times we will never understand or know what that good could be. But in this case, He has revealed to us at least some of the mystery in this miracle of life. The relationship we have developed with Darren's family has blessed us more than mere words can describe fully.

Many folks have seen the video about Garrett on youtube. That video was made by the American Heart Association at their request, to use Garrett's story to help raise awareness for heart disease research and promote organ donation. When that video was shown, at the "Heart Ball 2010" in February of this year before Garrett got sick again, Darren's family were special guests of the event and put an exclamation point on one of the rarely seen benefits of such a tremendous and selfless gift.

We met Darren's family almost as a fluke. It is unheard of for a donor family and a recipient family to be in the same hospital at the same time. Even more rare, would be the chance meeting in the same waiting room. They were there, praying for their Darren. We were there, praying for our Garrett. In His beautiful plan, he dampened the blow to all by bringing the two families together during a time of need and we have become very, very close. Last summer we gave them a horse to replace the one Warren had to leave behind when they moved from Cheyenne to the western slope. We share the same interests, love of the outdoors, love of family and our love of God Almighty. While Garrett can never replace Darren, I know it has brought them comfort getting to know and bring Garrett into their fold. They have given us a noble and unselfish gift by sharing Darren with us and giving Garrett another chance to grow up.

Kathy and Darren's mom are two kindred spirits who love, laugh and cry at times, together. When Garrett got sick this time, she was the first one to arrive at the hospital to be by Kathy's side during those first uncertain days. It was a 5 hour drive for her, and she was there before 24 hours had passed. While only God above knows the full meaning behind this journey, I'm so grateful for His willingness to share them with us in such a beautiful way. I know of no other donor/recipient family connection quite this special.

We share two children, literally, and we love Darren just as they love Garrett. I carry a photo of both boys in my wallet and have asked my dad to take Darren hunting in paradise. Only God could write a story this compelling. Regardless of what the future may hold, this chapter of the journey has given me a little glimpse of His stunning plan for us. Garrett and Jessi have new "brothers and sisters" to play with and to love as part of them.

It's springtime here on the front range. Even in the midst of our current struggle, we have been blessed with the beauty of new life as it saturates the senses with everything from litters of barn kittens to new wild flowers and baby calves sharing the same pasture. The robins have returned and are vocally claiming their territory as they prepare their nests for the baby birds we'll soon hear outside our windows during the day, and we'll soon go to sleep listening to coyote pups learning to sing. And the crescendo of today's songs echo with the sounds two boys make while playing together. Two boys brought together through tragedy, but focusing now only on their new brother and the joy they share. Good medicine.

Have a great tomorrow and enjoy this season that I'm sure was designed perfectly to celebrate life. After all, Easter signals the start of spring and there is no more important celebration of life.

JD

May 4, 2010

Garrett had a really good day today! He felt good, even though his heart rate nearly reached 150 bpm today. Trying as best we could to "ignore" the heart rate as long as he's feeling good, we enjoyed the warmth of a beautiful spring day together.

The kids and I lay in a hammock together for a while and for some reason, we got the giggles. After a few minutes, none of us could stop. It was one of these precious few moments that we get right now, where God allows us to, for just a short time, completely forget the reason we're all together in Denver in a hammock. Instead, we just held on to each other and rocked gently in the breeze and laughed for no reason at all. It was incredible.

I decided to head back home today. Work commitments make it hard for me to justify being gone more right now since he's starting to feel better. I have promised them and myself though, that if he continues to feel good next week, I'm going to take a few days just to enjoy being there when we're not scared out of our minds. I don't want to limit my time with them only to those times when he's having it pretty tough.

As I got ready to leave this afternoon, Garrett and Jessi came up to me with puppy dog eyes and asked "daddy, can we play catch?". I don't care what else was happening in the world, I was not about to pass up that chance. I didn't care when I got home, as long as I got to work on time tomorrow. So we got out the gloves and threw the ball until mommy decided Garrett had been active enough for one day :-) He just needs time to be a little boy sometimes. That helps him heal as much or more than any medicine.

The kids cried when I left and I must have gotten dirt in my eyes because they got a little wet, too. I hate leaving them. Kathy's nervous for me to be gone, but we have to believe what the doctors are telling us. This will take time and patience. We don't know why his heart rate keeps creeping up, but he feels good today and that's good enough. There's more questions than answers right now. She called me three times tonight before they went to sleep, just to confirm that he's ok. I've got both phones turned up loud next to the bed and I'll come a runnin' tonight if she gets too scared. Sometimes I have to leave just to show them that I'm not too scared (right) because they're going to feed off of my reactions, too. As long as 'daddy' looks ok, then everything must be ok. Right?

As I pulled in close to home, I saw the neighbor lady's place with part of her gate down. I feel bad because I told her I'd fix her fence about a month ago, then this all started. Maybe I'll have time to grab the welder and head over there in the next evening or two and put up some pipe for her. Normally, my little helpers would be there under their own welding hoods to ensure my work is satisfactory.

The world keeps spinning regardless of our personal trials or victories. It just seems to spin a little smoother when we're enjoying victories more. Today was a victory. Garrett felt good. He doesn't have the energy that he did a few months ago, but from where he's been lately, it was a big step. From the fear of the unknown that seemed to take too much of our thoughts lately, these children brought us to a point of joy today that we needed. We enjoyed laughter for no reason at all, threw the ball together, and for a while we didn't worry.

The joy I get from my children and the lessons they teach me make me a better man. Even in the midst of trials, their selfless love and laughter shows the resiliency and innocence we all need to learn from. I guess that's why we should always make each day prayerful. Even the bible tells us to "Give thanks in all circumstances, because this is God's will for you". If the kids weren't thankful for the moment, laughter would not have come. Jesus told us in Luke to "let the little children come to me, and do not hinder them, for the Kingdom of God belongs to such as these"..."anyone who does not receive the Kingdom of God like a child will never enter it." He was telling us to follow their lead.

I owe my kids a great deal of thanks for giving me this gift today. They've been scared, hurting and displaced from their "normal" life over night. Garrett thought he was coming up for a check up and didn't get to go home again. Instead of feeling sorry for himself, he and Jessi just keep looking for ways to be happy. As adults, we tend to look at problems like a calf looks at a new gate. Dumbfounded and not knowing what to do next.

I got a message tonight from the hospital regarding Garrett's biopsy surgery. I'm assuming they are going to move it up sooner, because of where Garrett is right now and the fact that he's not improving as quickly as we'd hoped. I'll find out soon enough and won't tell Garrett until I have to. But tomorrow brings new challenges, so I guess it'll really just have to be opportunities for laughter and victory. I think that's what the kids would do. That's what I'm going to do for them tomorrow. I'm going to follow their lead.

Hope your day is victorious.

God bless,

JD

May 3, 2010

After a fairly lengthy night of wondering, Garrett had his checkup this morning. There were no changes. So the good part, is that there were no changes. The disappointing part is that there were no changes. After considerable improvement over the past few checkups, we were hoping the trend would continue. It didn't.

We talked at length with Garrett's primary cardiologist, who reassured us that he was not overly concerned about Garrett's increased heart rate. What he eloquently reminded us was that we are not out of the woods. That's why they're keeping Garrett close, just in case this spins out of control again. Garrett has come a long way in a short time, but it could be months before we see any significant improvement in his heart function. And while we were not given any disturbing news, it was the first time that they have suggested they might move up Garrett's biopsy surgery. It is the only way to know the extent of the damage to Garrett's heart. Through pathology, they can determine if the heart is healed, healing, still containing infected cells and/or developing antibodies against the donor heart. This is a waiting game of ups and downs. For now, they increased Garrett's lasix to help him get rid of some fluid he's retaining, and some nasty stuff he has to take to fight thrush he's developed.

Tonight Garrett's heart rate got into the mid 140's, which prompted another call to the transplant team. With no other noteworthy symptoms, they won't get too concerned unless the heart rate exceeds 170. Disconcerting, but it's what we have to work with right now.

Garrett's well aware of everything that's going on and got pretty mad that his heart rate keeps going up. So we talked about what we are taught in Corinthians, that "these three remain: faith, hope and love. But the greatest of these is love". We discussed how our true faith is the confidence in our God, believing without seeing. Christ confirmed the blessings we receive for true faithfulness when He talked to doubting Thomas. Our faith works together with with hope, because we hope for paradise and being worthy of the promises of Christ. None of it matters without love. God showed His tremendous love for us, and we love Him in return. These three give us the strength to fight another day, to find victory in each day and to worry less because we know that God loves us more than we could ever love Him. This journey has given me, a daddy, so many opportunities to improve my own faith and to help my children develop their own walk. We will get better. Jesus' love sustains us. We have faith in Him, we hope to see Him in paradise some day and we thirst for His love to complete this unending circle.

Kathy tearfully told me tonight that all she wants for Mother's Day is for Garrett to get better. He will, mommy. He will.

For me, I long for the faith of the woman who only wanted to touch the hem of Jesus' clothing to be healed. That is strong faith.

Many thanks for the continued prayers for our little cowboy warrior and the family.

JD