Day 1 - Work Release

Today marks a new chapter in our story. Last night we were paroled to a half-way house about twenty minutes from here (if all other drivers stay home...45 minutes in normal traffic). As much as we wanted to escape the hospital, that first few days out is a little spooky. No monitors, no nurses, no doctors, no IV's....it's good, but a little spooky. Although this isn't our first rodeo, the situation is different this time and it will just take a while to adjust.

Garrett started crying last night again and it took a few minutes to find out why. Turns out he was just happy to be out of the hospital. After talking with him for a few minutes, I learned that when he first found out how sick he was, he didn't think he'd be leaving....ever. Do you ever wonder how many kids up here might think that way? And yet us "big folks" still find time to complain about our work load, or an extra bill in the mail.

That's sure one of the things that has been driven home, again, as I walk around this hospital. No matter how scared I might get, no matter how sick Garrett might be, it only takes a turn here or there to realize how incredibly blessed we really are. For example, our next door neighbor in the Cardiac Unit was a little baby girl with a severe heart problem. Her mother is a just a teenager who was there only once, and her "dad" was a teen gang banger who came by twice. I saw no other family support. When she cried, or needed held, it was a nurse who responded. Through the night, there was no one talking or singing quietly to her, or gently touching her tiny hand...just to let her know she is loved.

Garrett has had his struggles, trials and bumpy trails. No one can question that. It's been tough on the family in so many ways, financially, emotionally, spiritually, relationship challenges, work challenges, logistical challenges, horses go un-ridden, home problems, animals.......the list goes on. But when I sit and really look at all we truly do have, the support system and the faith we're blessed with cannot be matched, I don't believe, anywhere. I'm more grateful that I can express, and entirely humbled. Not for Garrett's pain and fear, but for the love and support that blankets my family. And for the family I have who love me. It helps make a very difficult journey one that becomes a true learning experience. I've grown and matured (sort of....I'll never completely grow up) and I love my family more today that I did yesterday. I'll love them more tomorrow that I did today. I can, because I understand that's where I gain my strength. Even Jesus told us that "the greatest of these is love". We pray for them all and hope that little girl's world changes for her.

Garrett got a pretty cool treat yesterday afternoon. Charles Sampson, the 1982 World Champion Bull Rider, stopped by with his son LC to visit Garrett. Garrett and Charles have met on several other occasions, so it was pretty neat for him to remember Garrett and come by. We got some neat pictures with the three of them. LC is a miracle boy, too. He was severely injured as a child and suffers to this day, but has recovered remarkably. Their experiences with Children's Hospital back then has kept Charlie committed to this day. He spends a lot of time visiting kids here.

I don't want every update to be a downer, so unless it's really serious, I won't say much other than it's been "about the same". We've figured out the new medicine schedule, though I still need to print out color photos to help us keep all the pills straight, and we have a safe place to rest. We're going to focus on the positive! We all know this will be a long haul, so we're cinching up tight and setting our feet. The benefits of being away from the germs in the hospital outweigh the risks of being away from emergency staff. A few more days on this round of infusions and he gets a break for a while. Just stay close and check in with the "parole office" a few times a week. As long as good luck still follows and we stay the course, we won't be remanded back to solitary. House arrest seems pretty cool right now.

As my good friend Fr. Mike Fones wrote to me "We have already won. Jesus has won the victory for us". And he reminds us that our Father in Heaven did not keep Jesus from suffering, even though He did nothing to deserve it. Our discomforts can benefit those who don't know Christ's love by offering our suffering for them. Tomorrow in Paradise, there will be no more suffering!


God bless and stay safe. Remember, everyday is a victory so Hug your kids!

JD

Ps - here's a link to a Garrett video several folks have asked to see: http://www.youtube.com/watch?v=cV4GZCuE0TQ

April 13, 2010

The doctors came by a little while ago and I asked for a "no bull-poo" assessment of our little situation here. It is likely to be a long haul for our little warrior. While his resting heart rate is getting better, it's really not a positive indicator of his heart's overall viability. The true litmus test won't be confirmed until they perform a biopsy in about 6 weeks. They need to give it that much time for his body to get better and to make sure the medicines are doing what they need. It's that same old balancing act. Too little anti-rejection medicine and he gets sick. Too much, and he gets sick. It's like trying to balance a turtle on a turkey feather. It can be done, but takes just the right touch.

I spent some really good, quiet time with Garrett last night. He's still pretty scared and was crying a little, saying "daddy, I don't want it to be my time yet. I just want to go home". Those are pretty hard words to hear, especially for a 10 year old boy who should only be worried about "how many barn kittens do I catch today, which baseball games will I start at pitcher and do I get to see a bunch of rodeos this summer".

http://www.youtube.com/watch?v=_l09AJ9lXSE&feature=related

The whole situation reminds me of a song a friend sent to me two years ago. I swear this song was written by someone who read my thoughts and silent prayers. If you close your eyes and listen to the words, it really strikes a chord in me that is exactly how I feel sometimes. Truth be known, this song probably does that for many untold numbers of parents. Kids just shouldn't be allowed to get sick...but they do. I can only hold strongly to the belief that God will make something amazing out of the discomfort, like maybe we'll grow in our love of God and gain strength through their pain to continue to fight for them, or maybe garner courage to do what is right for them regardless of our personal or political motivations, and maybe, just maybe, we'll find enough tenacity to fight for a world in which our grandchildren may have a peaceful place to live. We have to be learning something from this, otherwise it seems so pointless.

I'm looking over at Garrett right now, and he's sleeping soundly. A well deserved and needed nap. Not far from him, on a little bench in the room, his baby sister is keeping watch. They normally don't let kids her age into this part of the hospital, but we've been around here for so long they understand the incredible bond between these two. Jessi is the most unselfish person I know, and they realize that her love is as important for Garrett's recovery as any medication they can give to him. I'm grateful they made an exception.

More to follow. Just needed a forum to jot my thoughts for a few minutes.

Find the blessings in your day.

JD

Bump Along The Way

Wow. Not sure how to explain this one, but I'll try. Almost exactly two years ago, Garrett was playing baseball and was not feeling well. We found out just two days later that his heart was dying. You know the outcome, and we're blessed.

Just over a week ago, Garrett was hunting turkeys in Kansas and feeling fine. On the way home, he began complaining of a headache and side ache. That night, he had a very upset stomach and was not able to go to school the next day. He started feeling better by week's end and on Saturday, he had a baseball scrimmage. He again wasn't feeling well but wanted to play. He turned a near double play and got a good hit. But I could tell he wasn't on his game and didn't have energy. That night I checked his vitals and his resting heart rate was 135 bpm. We called the transplant team and they sent us to Children's Hospital on Sunday morning.

Testing revealed that Garrett is in full rejection and the right side of his heart is not fully functional. By the time we got to the hospital, his resting heart rate was 145 bpm. By last night, it was over 150. A nurse told me in the ER that they were concerned about heart failure.

He was immediately admitted and started on a form of chemo therapy aimed at destroying his immune system and re-building it. It's always a balancing act, but his system did what it was designed to do and attacked what it saw as a foreign body...his heart. The result was the heart starting to fail and his heart, lungs and liver getting full of fluid.

Last night and today were pretty rough on him. He's been in a lot of discomfort and very scared. But this evening, he seems to be doing better. They performed a small surgical procedure today to put in a "pic" line, which is basically a shunt that goes directly into his heart. The chemo they were putting in his I.V. line burned his veins and wasn't going to last. The pic will be more permanent so he can stay on a regimen over the next few months most likely. He's on a course now that will put him on the pic meds for a week straight. The hope is that he will respond quickly to the turbo dose of chemo and be able to leave the hospital yet this week. He will be treated much like a leukemia patient, in that he'll have to live pretty reclusively again for most of the summer. They want to get him out of the hospital as quickly as possible to get away from the germs. We'll have to live close to the hospital and bring him in every day for four hours to get his infusion. I haven't told him yet that his baseball is over for the year...before the first game. Again.

While it's a pretty significant rejection, everyone is feeling positive about his chances to whip this problem. Garrett's tenacity has shown over the years and we'll just have to cinch up and take on this fight a day at a time. He already in just over 24 hours on the meds has shown improvement. Hard to believe because he was really, really sick. Still is, but is just starting to feel a little better.

As things change, I'll update frequently. We have our Lord leading the way and giving us the ability to fight. We're blessed to have that chance and every day is a victory.

JD

Best Trophy Ever

Garrett and I recently spent a weekend of a lifetime together, hunting turkey in Kansas. It was a weekend to remember and I came home with my best trophy ever!

By way of a very good friend, Marv Clynke, Garrett and I were guests of the Southwick family at their ranch in north-central Kansas. The place is a wildlife mecca! Turkey, quail, pheasant, dove, deer, coyotes, owls, crows, snapping turtles, wood ducks, squirrels........more than we could count.

I say this was the weekend of a lifetime, and it is so. Garrett has hunted with daddy many times before. But this time was different. This time I was hunting with my friend and he was carrying his own tag, for the first time ever. Right in the middle of day two, we had worked our way down through a creek bottom so littered with deer tracks that it looked like someone was running cattle in there. As we clamored up to the top of the far bank, we found a good place to set up and ambush. Marv, who was guiding for us, was "bird dogging" about a half mile up from our location. We knew the birds were there, but it was so windy that they were tucked in pretty tight. So I set my back against a tree and pulled Garrett and his little shotgun (borrowed from Marv of course) up into my lap so we blended into the woods as literally just another "bump on a log". Within a few minutes, I got my trophy of a lifetime.

By the time Marv came to our location, I was holding my trophy as proudly as ever. Garrett had fallen asleep on daddy's lap. In the quiet time I had, just he and I before Marv arrived, I marveled at the goodness of God once again. Here in this beautiful place, surrounded by majesty of epic proportions, listening to a distant hen turkey calling, a crow scolding the hen and a woodpecker working on his own masterpiece, I held in my arms artwork unmatched. Through the "miles, trials, bumps, bruises and broken bones", we had reached a new pinnacle. Here, two hunting partners shared the beauty of God's hand, far from tubes, wires, needles, pagers, phones, doctors.....you get the idea. In the way only He could design, he gave me another gift I'll treasure all my days. He gave me the unconditional love of a little warrior cowboy, healthy and happy, in the only place he and I wanted to be right at that moment. And he let that little fighter relax enough to fall into a gentle sleep in daddy's arms. I've never brought home a better trophy. This one's mounted on the wall of my heart and will always hold a place of honor.

I'm continually astonished by the kindness of folks who reach out to us and do something special for my family. This hunt, this gift, will remain one of the most precious gifts I've ever received. It's hard to convey the sights, sounds, chill in the air, breeze........but believe me, all the stars aligned at that moment to impress a hallmark in my soul forever. Hearing his soft breaths, feeling his powerful heart, with him in my arms suddenly I could protect him again, if for only a few minutes. My love has never been stronger. Moments such as this one come along rarely, but thankfully, they do come along.

God bless you all. Take the time to find those moments with your little ones. They are fleeting at best, and to capture but one will give you the trophy of a lifetime.

JD

Organ Donor Awareness Week

The El Paso County Commissioners read a resolution on Tuesday, Garrett's 2nd anniversary with Darren's heart, to claim this week as Organ Donor Awareness week. We were invited to the public venue and were so honored to represent thousands of families effected by the need for organ donation.



They also recognized Garrett, Darren's family and Megan's family for their selfless sacrifice to reach out and help our Garrett. It was a very emotional event and well recieved by local media. Here are a few links to stories carried.



Garrett was so humbled by all the attention. He made a big deal about a "prayer box" given to him by Darren's family. They "put" a prayer into the necklace before they gave it to him. The prayer is for Darren's heart to continue to beat strongly and never fail Garrett, giving him a full life of joy and love. Garrett won't ever take it off.



Please consider becoming an organ donor if you haven't already. The heart we love with is not the heart we live with. Our souls' are already spoken for by the Perfect Physician. The rest is only here while we are on earth. If there is anything that we can do to help another, we are called to do so. That is why we allow Garrett's story to be told. If any part of our journey can help inspire someone to reach out, to help another or to find comfort in their own tough times, then we're happy to share the story.



God bless you all, and remember that in each of us beats the heart of a warrior. Find it and you will find a peace in Him that cannot be matched by anything on earth.



JD

http://www.coloradoconnection.com/news/story.aspx?id=424211

http://www.newsfirst5.com/news/organ-donation-helps-colorado-boy-live-twice/##

http//www.gazette.com/articles/lesson-95020-gets-title-html

Heart Ball 2010 - Two Years of Victory

Over the weekend, we had the honor of representing thousands of families at the American Heart Association Heart Ball in Denver. The 2010 event spotlighted the journey of our little warrior and the blessings received through organ donation and medical intervention.

The black-tie event is an annual gala to raise awareness and money to help pediatric cardiac disease research. A 7 minute video was played that chronicled Garrett's journey through 22 surgeries, 3 hearts and two heart transplants. The film crew interviewed the entire family individually last year, but we didn't get to really see it that night because we were on stage. We could tell by the audience reaction that it was powerful. Sunday night after we returned we had a private showing at the house. Wow......break out the tissues.

We were deeply honored to share this special evening at the Heart Ball with Garrett's donor family as our guests. To have Hal and Rebecca with us meant more than we could describe and put an exclamation point on the depth of emotion shared at the event. I was felt so privileged to introduce them to the doctor who performed Garrett's last transplant. As they shook hands, those of us watching were captivated knowing that two young boys, strangers, fought for their lives two years ago. Soon, the hands of that doctor would touch both boys as he took a life giving heart from one and placed it in another and immediately made the boys, one. The first and last hands to touch Darren as a baby and then before Garrett took a part of him to carry on. It was a powerful moment.

I'll post some photos soon, but suffice to say that it was a memorable event raising a lot of money for heart disease research. If one child, one family, one moment of research is helped or improved by knowing this story.....then we are humbled to share the journey.

God bless to all,

JD

Good News

Just wanted to let everyone know that Garrett's tests finally gave us some relief. The good news is that the pain does not seem to be related to his heart. The bad news is that he is still having discomfort, and it's likely that pain is related to inflammation inside the chest wall. Because of all the surgeries over the years and the metal bands holding his chest together, as his body grows it shifts these things around. No fun while he's going through it, but we're grateful that his heart is ok.

Other good news! Garrett's nightmares are subsiding. He's been seeing a counselor who specializes in these issues. Garrett loves her and she is really helping him relax and not be afraid to go to sleep. He's just way too young to carry that baggage around.

This weekend will be busy. We have been asked to be the ambassador family for the American Heart Association Heart Ball in Denver this year. They have created a movie about Garrett's life and will use it to raise funds to help research in this area. Then on Tuesday, the El Paso County Commissioners are dedicating a resolution, making the week of March 2nd "Donor Awareness Week". It's being done because of Garrett, and honors the two beautiful kids who lost their lives but whose families selflessly shared organs with Garrett and others to give them a second chance. It will be emotional for sure.

More soon. We keep you all in our prayers, always thankful for the support and love.

Praise God every day.....for every day is a victory!

JD