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B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humoral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocites, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppression, chemotherapy, plasmapheresis......................the list goes on and on.
These are but a few of the words and terms we've learned and heard about in the past few months. None of them make a whole lot of sense on their own. They are medicines, cells, diseases and treatments. The discussions that have developed because of Garrett's issues have included some or all of these at one point or another, but all we really know is that it's not "take two aspirin and call me in the morning." I wish it were that easy. We just want our healthy, happy boy back home again and playing in his yard.
The fact remains that his heart is sick and it needs to get better. We've learned that he has three different rejections going on. A battle on three fronts. He's fighting T-cell rejection from his body attacking his heart, and he's fighting B-cell auto-antibody rejection from his current heart and traces from his last heart that were never discovered.
We also know that Garrett was feeling better today and that is a blessing to us all. That's why I often say that every day is a victory. When we pray at night before we try to sleep, we ask God to hear us clearly. To see us holding Garrett up to Jesus in prayer and beseeching Him to grant our request. Nothing is impossible with God. Nothing.
I believe there are blessings of grace when we accept the pain and offer it for lost souls. Our fight is difficult, but it has a glorious gift at the end......Paradise. I cannot imagine going into a fight with only the earthly gratifications as our only reward. For 11 years now we have fought on this battleground. Somehow in His infinite love, God picks us up just when we can't take another step. He manages to give a sick little boy the ability to smile and play when he wakes up just a little better than he was the day before.
There are brighter days ahead, but darker ones may also linger in the shadows. Garrett wants to live. He wants to run and play and forget about the pain, needles, hospital beds and nightmares. I want that for him. But if I want for too much, too soon, impatience can cause more disappointment. So we will continue to wake each day and call it a victory, rejoice in the little achievements and pray that as time goes by, this pony's steps will become lighter and the grass will get a little greener.
We may have three fights going on at one time, but we also have a Trinity of power who have already won this biggest battle of all. So this battle is nothing. I'm just thankful for the little victories right now. Every day that Garrett wakes up and feels better, it's as if he forgot any pain from yesterday. This enthusiasm strengthens us, and it gives him more strength to fight the beast another day, hopefully knocking it out of the park this time.
Be blessed,
JD
Wednesday, June 2, 2010
Tuesday, June 1, 2010
June 1, 2010
Garrett's check up today showed that his anti-rejection blood levels are a little off, so they re-adjusted his meds again. More of that ol' balancing act. We learned that they didn't see any changes in his heart echo, which was a little disappointing but we're grateful it at least didn't go backward again. The past few had shown definate improvement in his heart function and the doctors told us that they need to see continued improvement. Obviously we wanted improvement, but it could just take a while.
On the brighter side, Garrett's little rash has subsided and his other issues were better tonight. He told me on the phone that he didn't feel "great" but he felt "good enough". I'll go with that. We can't be too selfish and have to remember that patience truly is a virtue.
I want to share part of a note that my sweet niece gave to me today when I got home. She is such a special lady and has a great walk with Christ. In her note, she wrote to me the following - "Never forget that you are enclosed in the most Sacred Heart of Jesus and it is there that He will protect you and reward you."
Here's hoping that the Sacred Heart of Jesus envelopes you all for a wonderfully blessed week.
In Him,
JD
On the brighter side, Garrett's little rash has subsided and his other issues were better tonight. He told me on the phone that he didn't feel "great" but he felt "good enough". I'll go with that. We can't be too selfish and have to remember that patience truly is a virtue.
I want to share part of a note that my sweet niece gave to me today when I got home. She is such a special lady and has a great walk with Christ. In her note, she wrote to me the following - "Never forget that you are enclosed in the most Sacred Heart of Jesus and it is there that He will protect you and reward you."
Here's hoping that the Sacred Heart of Jesus envelopes you all for a wonderfully blessed week.
In Him,
JD
Monday, May 31, 2010
May 31, 2010
We’ve had a super weekend, setting aside, if not momentarily forgetting the fear and it is now coming to a close. Garrett is starting to hurt again, probably as a reaction to the infusions from Friday and we’re praying he doesn’t get full-blown serum sickness again. Just the thought of it is disturbing and scares him a lot. He just got done asking me to take his vital signs again. I’m up with him tonight because the discomfort is making it hard for him to sleep. We’ve been trying to change the subject by discussing how much fun we had this weekend.
Yesterday we had a visit from great friends and today we got permission to take Garrett to a roping event for Western Wishes for a few hours. It was a tremendous experience and the winners of the mixed team roping, Jay and Tammy Ellerman gave their winning buckles to Jessi and Garrett and donated their winning money back to the event. That’s the second buckle Garrett got this weekend. Western Wishes also made a special presentation to him of a “Western Wishes Champion” buckle. The loving kindness of these and so many folks continues to amaze and humble me. Kathy even made a new friend at the roping whose son had open heart surgery several years ago. The two women found a lot in common, and through tears of remembrance and happiness, shared a unique bond that only mothers of sick children can know.
Garrett did really well today as the buckle presenter with Jessi as his assistant. They also gave each winner a “Cowboy Up” bracelet. The roping event today concluded a three-day event to raise money to help start a Colorado chapter of Western Wishes. As many of you know, Garrett has been a recipient of Western Wishes dreams in the past and we are so honored to use our story to help the program reach out to other kids. The cowboy family is very special. They often pull together to help each other as they did 100 years ago. I recently asked Garrett which charity he would choose to help support if we were ever able to be in a position to do so. Without a second thought, he said “Western Wishes”. He said there’s a few others like Transplant International and the American Heart Association, but the Western Wishes organization is set up to help sick and injured cowboy kids to just be kids again for a little while at a special cowboy events. In our lives, the blessings of Western Wishes have brought smiles to Garrett and Jessi time and again, and we will always be grateful for them and what they do. They work for God. www.westernwishes.org
Tomorrow brings us back to the hospital and with good news from that, sends me back to work. I hate leaving Kathy and the kids and can already feel myself tightening up. With this new leg of the journey upon us, it sure looks as though we’ll be doing this all summer. I know they’re in good hands up here, but in these uncertain times it makes it so very tough to drive away from them.
We keep trying to stay positive and thanking God every day for our blessings. Sometimes overwhelming thoughts of “why” and “what next” crop up and they make it hard to sleep, but that’s just the enemy trying to take control. We know that it may take many months for Garrett to heal completely and could even require another tour in the hospital if this round didn’t whip all the bad guys. We hope not, but that’s the reality. Garrett has accepted the fact that he will spend his birthday away from home. With this last fight the past few weeks our waiting time starts all over again. I’d like to say that as a family we’re always patient with each other but that would be a lie. But overall, I’m proud of how everyone is handling the ambiguity that is life right now. Occasional weekends like this one go a long way to suppressing the anxiety and unanswered questions.
With guardian angels working overtime I’m hoping Garrett will be blessed with fitless rest tonight. We’ll wake tomorrow having again made the decision to accept the situation, wrap ourselves in the Lord’s mighty armor and take the fight to the enemy. As our little warrior cowboy’d up again today, demonstrating that he truly is a cowboy gentleman, we’ll cowboy up along side of him.
JD
Yesterday we had a visit from great friends and today we got permission to take Garrett to a roping event for Western Wishes for a few hours. It was a tremendous experience and the winners of the mixed team roping, Jay and Tammy Ellerman gave their winning buckles to Jessi and Garrett and donated their winning money back to the event. That’s the second buckle Garrett got this weekend. Western Wishes also made a special presentation to him of a “Western Wishes Champion” buckle. The loving kindness of these and so many folks continues to amaze and humble me. Kathy even made a new friend at the roping whose son had open heart surgery several years ago. The two women found a lot in common, and through tears of remembrance and happiness, shared a unique bond that only mothers of sick children can know.
Garrett did really well today as the buckle presenter with Jessi as his assistant. They also gave each winner a “Cowboy Up” bracelet. The roping event today concluded a three-day event to raise money to help start a Colorado chapter of Western Wishes. As many of you know, Garrett has been a recipient of Western Wishes dreams in the past and we are so honored to use our story to help the program reach out to other kids. The cowboy family is very special. They often pull together to help each other as they did 100 years ago. I recently asked Garrett which charity he would choose to help support if we were ever able to be in a position to do so. Without a second thought, he said “Western Wishes”. He said there’s a few others like Transplant International and the American Heart Association, but the Western Wishes organization is set up to help sick and injured cowboy kids to just be kids again for a little while at a special cowboy events. In our lives, the blessings of Western Wishes have brought smiles to Garrett and Jessi time and again, and we will always be grateful for them and what they do. They work for God. www.westernwishes.org
Tomorrow brings us back to the hospital and with good news from that, sends me back to work. I hate leaving Kathy and the kids and can already feel myself tightening up. With this new leg of the journey upon us, it sure looks as though we’ll be doing this all summer. I know they’re in good hands up here, but in these uncertain times it makes it so very tough to drive away from them.
We keep trying to stay positive and thanking God every day for our blessings. Sometimes overwhelming thoughts of “why” and “what next” crop up and they make it hard to sleep, but that’s just the enemy trying to take control. We know that it may take many months for Garrett to heal completely and could even require another tour in the hospital if this round didn’t whip all the bad guys. We hope not, but that’s the reality. Garrett has accepted the fact that he will spend his birthday away from home. With this last fight the past few weeks our waiting time starts all over again. I’d like to say that as a family we’re always patient with each other but that would be a lie. But overall, I’m proud of how everyone is handling the ambiguity that is life right now. Occasional weekends like this one go a long way to suppressing the anxiety and unanswered questions.
With guardian angels working overtime I’m hoping Garrett will be blessed with fitless rest tonight. We’ll wake tomorrow having again made the decision to accept the situation, wrap ourselves in the Lord’s mighty armor and take the fight to the enemy. As our little warrior cowboy’d up again today, demonstrating that he truly is a cowboy gentleman, we’ll cowboy up along side of him.
JD
May 30, 2010
Let me first apologize for not updating this in the past few days. In my selfishness, I failed to let everyone know that we are OUT of the hospital again! After so many days of hospital living, we're all kind of worn out and being selfish with our time together.
After Friday’s infusions of more anti-rejection chemos and IV steroid, we were given the weekend off. Garrett was allowed to stay at the motel with us and we just hunkered down to soak up the sunshine that had just been injected into our lives. In addition to the IV immune globulin treatment to help develop antibodies to protect against infections, they infused a substance called Rituximab. It’s frequently used in chemotherapy treatment for types of non-Hodgkins lymphomas as a T-cell attack. So far, Garrett has not had any significant reaction to this medicine like he did with the anti-thymocite globulin used last time, but we won’t be clear of that possibility for about a week.
The past few days have been wonderful. Garrett and Jessi have been laughing and playing like they haven’t done for two months. We’re keeping a close eye on his activities so he won’t over do it, but at the same time we don’t want to make him live in a bubble and are letting him be a little boy for a few days. On Tuesday, we’ll be back to the hospital for a checkup and if the echo shows improvement, we have even more reason to be hopeful. If so, he gets to stay out of the hospital and move back to his aunt’s house. If not, he may end up back in-patient for more infusions. Either way, we’re back to step-one of the waiting game. Another biopsy is planned in about 6 weeks.
We ran into another family the other day, who like us, have a very sick child. We hurt for them because they don’t seem to have the spiritual healing and faith to help them fight their predicament. One of the father’s comments was “we’re just getting by one day at a time and it just sucks the wind out of you”. “The whole thing sucks. Financially, our backs are against the wall and we just wake every day to see if (their child) is worse, or just crappy”. I’ve said it before, but I really don’t know how anyone can go through this type of emotional trauma without God to help the heartbreak. We’re praying for them and would appreciate it if you would, too.
Don’t get me wrong, we’re not running around singing and dancing every day, but if we wake up tomorrow, we know we have the chance to keep fighting and praise God for that opportunity. We’ve sure felt like dancing the past few days, though. With his little body starting to replace the good things removed during the plasmapheresis, Garrett is feeling so much better. It really is a joy to see the transformation. His color is back and there’s a twinkle in his eyes. Let’s just keep praying that the future reveals that the rejection is now stopped and only healing remains. His heart rate continues to bounce around, but I’m hoping it’s only because like any wounded muscle, it needs time to get back into shape.
For now, we’re having fun with our new found freedom and may even go watch a roping on Memorial Day. His immune system is drained again so extra-special precautions are in order, but he’s happy and right now, that’s good enough. We're not out of the woods, but I think I might see timberline up ahead. We know that we’re ok. One way or the other, God promised over and over again. We have to believe in that fact. While the fear still resides, we won't let it win because we keep reminding ourselves of our Lord's promises.
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:16)
Hard to argue with that, huh?
God bless,
JD
After Friday’s infusions of more anti-rejection chemos and IV steroid, we were given the weekend off. Garrett was allowed to stay at the motel with us and we just hunkered down to soak up the sunshine that had just been injected into our lives. In addition to the IV immune globulin treatment to help develop antibodies to protect against infections, they infused a substance called Rituximab. It’s frequently used in chemotherapy treatment for types of non-Hodgkins lymphomas as a T-cell attack. So far, Garrett has not had any significant reaction to this medicine like he did with the anti-thymocite globulin used last time, but we won’t be clear of that possibility for about a week.
The past few days have been wonderful. Garrett and Jessi have been laughing and playing like they haven’t done for two months. We’re keeping a close eye on his activities so he won’t over do it, but at the same time we don’t want to make him live in a bubble and are letting him be a little boy for a few days. On Tuesday, we’ll be back to the hospital for a checkup and if the echo shows improvement, we have even more reason to be hopeful. If so, he gets to stay out of the hospital and move back to his aunt’s house. If not, he may end up back in-patient for more infusions. Either way, we’re back to step-one of the waiting game. Another biopsy is planned in about 6 weeks.
We ran into another family the other day, who like us, have a very sick child. We hurt for them because they don’t seem to have the spiritual healing and faith to help them fight their predicament. One of the father’s comments was “we’re just getting by one day at a time and it just sucks the wind out of you”. “The whole thing sucks. Financially, our backs are against the wall and we just wake every day to see if (their child) is worse, or just crappy”. I’ve said it before, but I really don’t know how anyone can go through this type of emotional trauma without God to help the heartbreak. We’re praying for them and would appreciate it if you would, too.
Don’t get me wrong, we’re not running around singing and dancing every day, but if we wake up tomorrow, we know we have the chance to keep fighting and praise God for that opportunity. We’ve sure felt like dancing the past few days, though. With his little body starting to replace the good things removed during the plasmapheresis, Garrett is feeling so much better. It really is a joy to see the transformation. His color is back and there’s a twinkle in his eyes. Let’s just keep praying that the future reveals that the rejection is now stopped and only healing remains. His heart rate continues to bounce around, but I’m hoping it’s only because like any wounded muscle, it needs time to get back into shape.
For now, we’re having fun with our new found freedom and may even go watch a roping on Memorial Day. His immune system is drained again so extra-special precautions are in order, but he’s happy and right now, that’s good enough. We're not out of the woods, but I think I might see timberline up ahead. We know that we’re ok. One way or the other, God promised over and over again. We have to believe in that fact. While the fear still resides, we won't let it win because we keep reminding ourselves of our Lord's promises.
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:16)
Hard to argue with that, huh?
God bless,
JD
Thursday, May 27, 2010
May 27, 2010
A DAY TO REMEMBER!
We woke this morning to quite a surprise, and it was just what the doctor ordered. Literally. We almost had to pinch ourselves to see if it were really true! Garrett's cardio team decided that he needed a break. They informed him that he would have to go through another round of plasmapheresis plus another one-hour infusion, then if he were feeling ok, they'd let him go to the ball game! Unbelievable!!
Blood tests this morning showed that his electrolyte levels were still a little off, but much better than yesterday. Garrett was feeling better this morning and he was motivated now to stay feeling better for the day. The doctors told us that they conferred and felt that Garrett's morale had taken too many hits lately. In their combined opinion, the benefits of waiting another day for more infusions and having a day away outweighed the risks. It was a beautiful day and if we handled it properly, a trip to Coors Field would be not much different than taking him outside on the hospital lawn for some fresh air.
By 2pm Garrett was done with all his work for the day and they removed the neck line. They put a pressure bandage on the wound, wrapped up the IV in his arm (because we’ll need it again tomorrow) and after another dose of electrolytes gave us an R&R pass for the day. They gave us a "to do" list to ensure a safe day, made sure we had all the emergency phone numbers we needed, and sent us on our way. We put him in a wheelchair, mask and his Rockies jersey and headed for the park. We didn’t get there until the bottom of the 6th inning, but as it turns out that was about perfect. He looked pretty rough, but you couldn't knock the smile off of his face with a sledge hammer.
The ushers hid the wheelchair and I helped him down the stairs to our magical location. After sterilizing the seats, he got to see the 7th and 8th from behind home plate, but by then the sun had taken his steam. We moved into the shade for the top of the 9th and the game was over. It was a short game for us but it did more for his self-esteem than anything has lately. Having this come one day after his buddy, former Major League great Tom Urbani came to visit him and he’s been in hog heaven today.
Here comes the icing on the cake. They let Garrett stay with us at the motel tonight! We’re close to the hospital so they’re ok with it. This is the first time all of us have been in the same place, all by ourselves, since this leg of the journey began at the first of April. Happiness abounds tonight.
Tell me God doesn’t answer the prayers of wounded warriors! Just yesterday we were praying for a little tranquility in Garrett’s life and were amazed by this tremendous gift the doctors let us have today. Tomorrow brings another day of work at the hospital, but we’ll all be a little more rested and rejuvenated. We don’t have to be there until 9am, but Garrett will have to undergo about 8 hours of infusions with a new med. It’ll be a tough day, but we’re more ready for it now.
I’m closing tonight with a scripture passage put on Garrett’s hospital wall by one of his nurses. Today, it read so true, to so many.
“Let your light so shine before men, that they may see your good works and glorify your Father in Heaven. “ Matt 5:16
We will continue to try our best to do just that.
God bless,
JD
We woke this morning to quite a surprise, and it was just what the doctor ordered. Literally. We almost had to pinch ourselves to see if it were really true! Garrett's cardio team decided that he needed a break. They informed him that he would have to go through another round of plasmapheresis plus another one-hour infusion, then if he were feeling ok, they'd let him go to the ball game! Unbelievable!!
Blood tests this morning showed that his electrolyte levels were still a little off, but much better than yesterday. Garrett was feeling better this morning and he was motivated now to stay feeling better for the day. The doctors told us that they conferred and felt that Garrett's morale had taken too many hits lately. In their combined opinion, the benefits of waiting another day for more infusions and having a day away outweighed the risks. It was a beautiful day and if we handled it properly, a trip to Coors Field would be not much different than taking him outside on the hospital lawn for some fresh air.
By 2pm Garrett was done with all his work for the day and they removed the neck line. They put a pressure bandage on the wound, wrapped up the IV in his arm (because we’ll need it again tomorrow) and after another dose of electrolytes gave us an R&R pass for the day. They gave us a "to do" list to ensure a safe day, made sure we had all the emergency phone numbers we needed, and sent us on our way. We put him in a wheelchair, mask and his Rockies jersey and headed for the park. We didn’t get there until the bottom of the 6th inning, but as it turns out that was about perfect. He looked pretty rough, but you couldn't knock the smile off of his face with a sledge hammer.
The ushers hid the wheelchair and I helped him down the stairs to our magical location. After sterilizing the seats, he got to see the 7th and 8th from behind home plate, but by then the sun had taken his steam. We moved into the shade for the top of the 9th and the game was over. It was a short game for us but it did more for his self-esteem than anything has lately. Having this come one day after his buddy, former Major League great Tom Urbani came to visit him and he’s been in hog heaven today.
Here comes the icing on the cake. They let Garrett stay with us at the motel tonight! We’re close to the hospital so they’re ok with it. This is the first time all of us have been in the same place, all by ourselves, since this leg of the journey began at the first of April. Happiness abounds tonight.
Tell me God doesn’t answer the prayers of wounded warriors! Just yesterday we were praying for a little tranquility in Garrett’s life and were amazed by this tremendous gift the doctors let us have today. Tomorrow brings another day of work at the hospital, but we’ll all be a little more rested and rejuvenated. We don’t have to be there until 9am, but Garrett will have to undergo about 8 hours of infusions with a new med. It’ll be a tough day, but we’re more ready for it now.
I’m closing tonight with a scripture passage put on Garrett’s hospital wall by one of his nurses. Today, it read so true, to so many.
“Let your light so shine before men, that they may see your good works and glorify your Father in Heaven. “ Matt 5:16
We will continue to try our best to do just that.
God bless,
JD
Wednesday, May 26, 2010
May 26, 2010
Well, I guess I’m just not sure what to write lately. It seems that every time I jot a note about Garrett feeling better, within hours he feels worse. When I write that he’s feeling tough, he then proves me wrong by finding a burst of energy. Today was no different. Garrett had little energy today and was pretty melancholy and discouraged most of the day. One of his IVs was plugging up, so they had to have two more finger pokes just to draw blood for testing. We’re praying they won’t have to start another IV.
Garrett had a pretty tough night last night and woke this morning feeling very tough. His face is puffy from the disease and the treatments and his whole body aches. The little cowboy tries really hard to stay positive and feel good, but the apprehension he’s feeling about his immediate and distant future is pretty consuming. It would be hard enough for him under normal circumstances, but when he is tired and sick it gets magnified. He’s been having irregular heartbeats the past 24 hours that are different than what he’s felt before and they scare him. At one point he told me “daddy, I’m sorry I’m sad today. I’m trying to stay happy because I know what happens has to happen”. Y’know what? He’s earned the right to feel that way for a while. He asked his mommy to pray with him several times this evening, asking Jesus to make him better. When I talked to her at bedtime, she tearfully told me that it’s hard for her to understand right now…”he just doesn’t deserve any of this.” She’s right, but we will continue to trust in God’s perfect plan. We try to keep an honest perspective because while we're fighting a tough fight, in this hospital it is common to find folks who don't have near the blessings that we've been given.
Blood tests today show that his electrolytes are out of whack so they gave him a couple doses through the evening to help. These electrolyte disturbances primarily involve abnormalities in the levels of sodium, potassium, and calcium. While potentially serious if gone un-corrected, it is not surprising because of the oil changes he’s undergoing. Pulling the old plasma out of his system not only gets rid of the bad things, it also removes good stuff, too.
We did get a nice interruption part way through the day when some folks from out of town dropped in to bring us gifts and just pray with us a while. A very close friend of ours from Oklahoma also came all the way up here, too, just to offer support and be here today. These visits were timed perfectly and Garrett definitely cheered up and felt better for a while.
Tomorrow is a pretty large day for our warrior. Garrett has a 2 ½ hour plasmapheresis procedure starting at 7am, followed by 6 + more hours of anti-rejection infusions. But it’s supposed to be a beautiful day outside and we have lots of new movies to watch, so that will help take away some of the blues.
I can’t write much more tonight because I’m tired and need to re-charge the system. Kathy’s taking the night shift and I’m at the hotel with Jessi. We decided to get a room about 10 minutes away because true rest is rare at the hospital. We’re taking shifts so we can keep up our strength for him and for God. I’ve included a couple of photos, not to shock, but just to show you how sick our little guy is right now and how glorifying it will be to see a happy, healthy little boy again.
We deeply appreciate the prayers, intentions and love sent to Garrett. I’m asking that you continue to hold him up to our Lord in prayer and ask for a little tranquility in his mind and heart. His journey has many more miles to go.
JD
May 25, 2010
Today, we got more of them than they got of us. Garrett had a really rough night of last, but mercifully today was better. He underwent another round of plasmapheresis and another dose of anti-rejection infusion without any problems. Although extremely tired and still very uncomfortable, he stayed in good spirits. He wore a Nike arm band today that Chris Thomas, his Air Force buddy, gave him after the Armed Forces Bowl. He said it helps him be tough like Chris.
This afternoon after the oil change, he asked to go for a walk. Said his rear end was getting sore. Geez, I don’t know how he lays in that prison of a bed as long as he does without complaining. We got permission to mask him up and go on a little expedition on the floor, but he didn’t have much strength. We ended up getting a wheel chair after about 100 yards and Jessi pushed him around a while.
We came up with an ingenious solution to the 4-6 inches of lumen connections sticking out of his neck. They tend to bend over and hang out, catching on anything, and this obviously causes him concern and discomfort. So before we took our trip around the floor, I took some coban, which is like elastic vet-wrap tape. I made a sort of Rambo-like head band. It holds the lumen ports against his head so they don’t bounce around. After putting the mask on, he looked like a diminutive bandit heading out to rob a 7-11.
We’re hoping that tomorrow or Thursday we can make a conference call of sorts to his classmates. It’s their last week of school and we initially had planned to surprise him with a day trip home to see his friends, from a distance of course. Following that, we had tickets to the Rockies game for this Thursday’s matinee. They were a gift and were right behind home plate. Well it’s pretty certain we’re not going to make either of those, so at least we want him to be able to say “hi” to the kids at school one last time before summer. Hopefully he’ll get the chance to see his buddies before too long and just be a little boy again.
He’s been resting well tonight so far, but gave me a bit of a shock when his alarms went off about midnight. His pulse rate went way down into the high 70’s and his respirations were down to 4-5 per minute! Then he got a little fussy and was obviously having a nightmare again. His vitals suddenly shot up to over 120 bpm with 19 respirations. After a little while he settled, but for a few minutes my own heart got to beating pretty fast. Those bad dreams must really be something!
I had another friend ask how we try to keep a positive attitude during the tough times. It isn't always easy, nor are we always smiling. But it's the big picture that counts. During my “down time” I’ve been reading “Lone Survivor” by Marcus Luttrell, a retired Navy S.E.A.L. who recounts his harrowing battle in Afghanistan in 2005. It is the worst loss of life for the S.E.A.L.s ever, and yet describes a personal triumph of monumental proportions. It is a must read for anyone who wants to know what really happens over there and what men are capable of enduring when they refuse to quit. The “never-say-die” mind-set of these heroes is awesome. I find myself reading all kinds of books throughout the year, but tend predominantly toward true stories of valor and achievement. They inspire and help me to keep my focus and remind me that battles are won or lost based on faith and attitude.
We try to surround Garrett with positive thoughts and examples. We encourage him to seek role-models who display behavior that demonstrates their faith in God, willingness to first learn to serve others and who drive-on through pain and sometimes seemingly insurmountable odds, to honorable victory. We can provide the information but that decisive, stubborn and competitive fortitude has to come from within. I think we’d all agree that this boy has it.
Have a blessed day and don’t forget to fight the good fight!
JD
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