April 17, 2010

We got quite a neat present today. I heard Garrett laughing this morning and it was the first time I'd heard that sound for over a week. God, it was so beautiful. I can't believe I've become so routine in my world that the subtle nuances that typically go unnoticed are now resounding with thunderous exclamation. I guess it's a good reminder for me not to take for granted the really important things, like a child's laugh or the amazement on their faces when they think they've discovered a new bug or new breed of barn cat.

We really appreciate that pleasantry today. Yesterday was a little tough on the cowboy and family. Fortunately the end of this session of infusions is in sight and he can start feeling better soon. I'd gone home for a night to check on the horses and dogs and get some things done at work but before the day was out, I'd heard from Jessi 5 times, Kathy 3 times and Garrett 3 times. They were not at all comfortable with daddy being gone, so I pulled the pin and headed back to Denver. There was so much warmth and feeling of relief to have us all together. I even brought Garrett's rat terrier "Stella" back with me. The kids needed a little of home with them.

The latest update is that Garrett has lost about 7 pounds, but his lungs are clearing up nicely. He is still a little puffy in his face and belly, but it will take a while for that to subside because his liver is so enlarged. On Monday we plan to have another echo done, but we don't expect to see any big changes. What we do know right now is that this infusion treatment completely kills off all the white blood cells so he has no ability to fight any infection right now. At the same time, because the white cells are gone, those nasty T cells that attacked the heart are not there to hurt it any further. As his immune system re-builds, the new platoon of T cells should be indoctrinated to the new anti-rejection medication and not perform mutiny like the last crew. For now, the doctors will remove the pic-line this week because the risks of infection due to the open wound are greater than having to put another one in if he gets sicker later on.

Hope everyone is having a blessed weekend. We are, because we're all together as a family, and that's good enough.

JD

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