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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
Thursday, May 6, 2010
Wednesday, May 5, 2010
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
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
Tuesday, May 4, 2010
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
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
Monday, May 3, 2010
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
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
Sunday, May 2, 2010
May 2, 2010 (third post)
How powerful is community? How powerful is God's love? No man could be more proud of what my children have done. Garrett's story has touched a bunch of folks. Tom Urbani, former Cardinal's pitcher wrote today "He's brought a whole community together. I'm honored to call him my friend....."
After reading my emails, I just had to share this picture. It brought me up.
Tom was referring to a car wash held today to benefit the High Plains Little League and Garrett. In the snow and cold wind, cars were lined up, I'm told. So many incredible kids braved the cold to show Garrett they want their friend back on the diamond. This picture says it all. What a great community. "Thanks" will never be enough.
May 2, 2010
A short update tonight. We just got done praying as a family for strength, healing, and appreciation for what this journey is doing for us. We're closer as a family, we're closer to our God and we're being blessed each day by more folks who love Christ being brought into our lives.
Garrett's resting heart rate was up to 137 today. I phoned the on-call coordinator with the transplant team. Several phone calls and visits with cardiologists later it was decided to give him another dose of a diuretic. We're hoping that it's just side effects of the medicine he's on to fight the side effects of the medicine he was taking to fight the rejection. We'll find out more in the morning.
Kathy is very scared tonight. There's just so much we don't understand about why these changes are occurring again. I told the nurse today on the phone that I don't even trust my own instincts anymore regarding Garrett. Every time we think there is something up, they run myriads of tests only to come up with more question marks than answers. It happened in January of 2008 and we know what happened in March of that year. It happened in February of this year and he got sick anyway. Now in these past two days, my gut tells me that something is up again but the nurses are not overly concerned. It's quite a chess game. I hope they're right.
As Kathy quietly cried on my shoulder tonight, out of sight and sound of the children, I reassured her as best I could. I hope I was convincing. She deserves to rest peacefully tonight. Garrett had a few really good days and is probably just a little tired from the activity.
I had a brief conversation with a friend today and we discussed prayer. It's not "when we pray", it's a better question to ask "when don't we pray". Each breath of each day should be for God. To talk to Him like the friend He is. To cry to Him when we're scared. To laugh with Him when we're happy. To thank Him for every gift and to trust in Him that His plan is perfect. I think life can be a prayer when we try for Him. Formal prayer is beautiful, but informal prayer is constant. At least that's what I try to do. I know I fail miserably, but I have to reach for it. We're ok tonight. He knows what He's doing.
Morning is coming, and with it more answers. May our Lord God grant you peaceful sleep and His angels keep watch through the night.
JD
Garrett's resting heart rate was up to 137 today. I phoned the on-call coordinator with the transplant team. Several phone calls and visits with cardiologists later it was decided to give him another dose of a diuretic. We're hoping that it's just side effects of the medicine he's on to fight the side effects of the medicine he was taking to fight the rejection. We'll find out more in the morning.
Kathy is very scared tonight. There's just so much we don't understand about why these changes are occurring again. I told the nurse today on the phone that I don't even trust my own instincts anymore regarding Garrett. Every time we think there is something up, they run myriads of tests only to come up with more question marks than answers. It happened in January of 2008 and we know what happened in March of that year. It happened in February of this year and he got sick anyway. Now in these past two days, my gut tells me that something is up again but the nurses are not overly concerned. It's quite a chess game. I hope they're right.
As Kathy quietly cried on my shoulder tonight, out of sight and sound of the children, I reassured her as best I could. I hope I was convincing. She deserves to rest peacefully tonight. Garrett had a few really good days and is probably just a little tired from the activity.
I had a brief conversation with a friend today and we discussed prayer. It's not "when we pray", it's a better question to ask "when don't we pray". Each breath of each day should be for God. To talk to Him like the friend He is. To cry to Him when we're scared. To laugh with Him when we're happy. To thank Him for every gift and to trust in Him that His plan is perfect. I think life can be a prayer when we try for Him. Formal prayer is beautiful, but informal prayer is constant. At least that's what I try to do. I know I fail miserably, but I have to reach for it. We're ok tonight. He knows what He's doing.
Morning is coming, and with it more answers. May our Lord God grant you peaceful sleep and His angels keep watch through the night.
JD
May 2, 2010
I spoke with my mom Saturday afternoon and after asking how Garrett was doing, and the rest of the family, she mentioned how much she looks forward to reading these updates. It was a gentle reminder to make time and jot something down this weekend. Sometimes I forget how many folks use this forum to stay in "contact" with Garrett and his situation. It's been a great piece of therapy for me, to write and use this as a diary of sorts to later maybe be gleaned for a larger project someday. I need to remember that mom and many others use this as sometimes their only way to keep from wondering how our little warrior is handling the journey.
To be honest, I've spent the past 24 hours back with my family in tact and being quite selfish with my time. When Jessi and I arrived yesterday evening, Garrett met us at the door with tears in his eyes and held on to use for a long time. Then they went through a bunch of hand-made cards from Garrett's classmates. Friday was "Cowboy Up Day" in honor of Garrett at his school. All the kids and teachers dolled up in their best cowboy renditions just for him. Garrett and Jessi later spent 3 hours having fun with a whoopee cushion and "getting" everyone in the house, at least once.
It's tough dealing with the separation. Normally, these weekends in April and May would find me helping friends working calves. But this isn't a normal year. The brandings will just have to happen without me this year. There's no place I'd rather be than right here. Maybe Jessi and I can sneak off to one of them. She needs a special day, too, and there's nothing she loves more than helping work the baby calves.
It's now about 1:30 am, and I can't make myself go to sleep. Garrett has long ago fallen asleep next to me on our mattress on the floor in the basement here, but I just want to lay here and watch him. I smile every time "Sir kicks alot" stretches out and whacks me in the shins or hollers out in his sleep for someone to throw the ball harder. The little "annoyances" that once aggravated me when he just "had to" sleep with me, tonight bring me a tremendous sense of joy. Not long ago, this moment was uncertain.
Before he faded off, he asked me to check his vitals again. He's more attentive to his body now than ever and wants to know. His blood pressure is good, but his pulse rate has steadily increased a little in the past few days. Not enough to be overly concerned, but enough to raise my eyebrow. He was in the high 90's a week ago, and in the 120's tonight. I'm glad we have another check up on Monday. It could also be the excitement of having us all together again, seeing Levi last night (those two fighters really help each other stay strong) and/or a visit from one of his very best pards today. We also played catch for quite a while this afternoon. We were enjoying this new found freedom so much that we over did it a little. He got to feeling a little fatigued after, so tomorrow we'll take it easy. But that's what he needs to do. He needs to test his body a little at a time, listen to it and respond accordingly. We have to remind ourselves that this is a marathon, not a sprint. He can still throw the ball though! He stung my had a couple times pretty good pitching this afternoon. We took our break to watch the Kentucky Derby. Kathy picked the winner.
Garrett's doing really well overall. His face is puffy right now, but most likely from the steroid treatment he's on. He finishes it this weekend and should lose his new "baby cheeks" shortly. He just jokes about it and says he's starting to look like one of the chipmunks.
Kathy and I reflected tonight on our 10 years of marriage. How our "honeymoon" was interrupted by my fathers death, then we learned we were pregnant with Garrett and he was sick. Between he and I and Jessi, we've spent way too much time in hospitals in the last 10 years but that's just the way it is. It makes times like right now so much sweeter. His little terrier is asleep on the mattress next to him, his foot is on my leg...........and life is Good!
Tomorrow Jessi and I will sneak out and go visit my dad's grave early in the morning, go to church and relish the last part of our weekend together as a family. It seems like there's always a head wind driving back south. I guess the ol' pickup doesn't want to go back without them either.
I'll drop another note after Monday's check up. Kathy's anticipation is rising as we're now just a little over 3 weeks away from the biopsy. That's when we'll get a lot of answers to lingering questions. We just have to enjoy every minute of these times, one day at a time, and pray for the news we want so much.
In Him,
JD
To be honest, I've spent the past 24 hours back with my family in tact and being quite selfish with my time. When Jessi and I arrived yesterday evening, Garrett met us at the door with tears in his eyes and held on to use for a long time. Then they went through a bunch of hand-made cards from Garrett's classmates. Friday was "Cowboy Up Day" in honor of Garrett at his school. All the kids and teachers dolled up in their best cowboy renditions just for him. Garrett and Jessi later spent 3 hours having fun with a whoopee cushion and "getting" everyone in the house, at least once.
It's tough dealing with the separation. Normally, these weekends in April and May would find me helping friends working calves. But this isn't a normal year. The brandings will just have to happen without me this year. There's no place I'd rather be than right here. Maybe Jessi and I can sneak off to one of them. She needs a special day, too, and there's nothing she loves more than helping work the baby calves.
It's now about 1:30 am, and I can't make myself go to sleep. Garrett has long ago fallen asleep next to me on our mattress on the floor in the basement here, but I just want to lay here and watch him. I smile every time "Sir kicks alot" stretches out and whacks me in the shins or hollers out in his sleep for someone to throw the ball harder. The little "annoyances" that once aggravated me when he just "had to" sleep with me, tonight bring me a tremendous sense of joy. Not long ago, this moment was uncertain.
Before he faded off, he asked me to check his vitals again. He's more attentive to his body now than ever and wants to know. His blood pressure is good, but his pulse rate has steadily increased a little in the past few days. Not enough to be overly concerned, but enough to raise my eyebrow. He was in the high 90's a week ago, and in the 120's tonight. I'm glad we have another check up on Monday. It could also be the excitement of having us all together again, seeing Levi last night (those two fighters really help each other stay strong) and/or a visit from one of his very best pards today. We also played catch for quite a while this afternoon. We were enjoying this new found freedom so much that we over did it a little. He got to feeling a little fatigued after, so tomorrow we'll take it easy. But that's what he needs to do. He needs to test his body a little at a time, listen to it and respond accordingly. We have to remind ourselves that this is a marathon, not a sprint. He can still throw the ball though! He stung my had a couple times pretty good pitching this afternoon. We took our break to watch the Kentucky Derby. Kathy picked the winner.
Garrett's doing really well overall. His face is puffy right now, but most likely from the steroid treatment he's on. He finishes it this weekend and should lose his new "baby cheeks" shortly. He just jokes about it and says he's starting to look like one of the chipmunks.
Kathy and I reflected tonight on our 10 years of marriage. How our "honeymoon" was interrupted by my fathers death, then we learned we were pregnant with Garrett and he was sick. Between he and I and Jessi, we've spent way too much time in hospitals in the last 10 years but that's just the way it is. It makes times like right now so much sweeter. His little terrier is asleep on the mattress next to him, his foot is on my leg...........and life is Good!
Tomorrow Jessi and I will sneak out and go visit my dad's grave early in the morning, go to church and relish the last part of our weekend together as a family. It seems like there's always a head wind driving back south. I guess the ol' pickup doesn't want to go back without them either.
I'll drop another note after Monday's check up. Kathy's anticipation is rising as we're now just a little over 3 weeks away from the biopsy. That's when we'll get a lot of answers to lingering questions. We just have to enjoy every minute of these times, one day at a time, and pray for the news we want so much.
In Him,
JD
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