.JPG)
.jpg)
Well, I promised an update as soon as we got word about the last test we were waiting for. The results of the PRA came in late this afternoon. Unfortunately, we got the wind knocked out of us a little today as the results weren’t what we had hoped and prayed for, but we’ve got to keep in mind the tremendous victory we had yesterday.
The up-side is that Garrett’s PRA is a little lower (89) than in June (96). The target range is around 25. So what does this all mean. Well, basically Garrett is out of immediate danger of general lymphocyte cell rejection and his body is not trying to kill his heart anymore. The problem with a high PRA is that is presents a different, increased potential risk of additional rejection than other cell-mediated rejection. A high PRA can cause immediate rejection of a new transplanted heart, in spite of powerful anti-rejection medications available right now. But since we’re already in to our 2nd year with this heart, I feel like we’re ahead of the game.
We’re staying positive and know that God has the Perfect Plan for Garrett. Because we’ve completely beaten the lymphocyte rejection now, we’re on top of the fight. What we have to do now is set our game plan to fight the PRA and get it considerably lower. This means he’ll most likely have to undergo more IVIG, Cellcept increase, prograf infusion and plasmapheresis again. In talking with the doctors today, we all feel that the family needs a little vacation to relax and we’ll set our battle plan when we return. I’m hopeful this doesn’t mean another relocation to Denver, but we’ll do whatever we have to do.
I don’t want anyone to be disheartened by this news. We are winning this battle! We knew this would be a long fight and we have to stay strong and continue to take the fight to the enemy! We need everyone to stay positive and continue to pray for complete healing. We’re not out of this. Not by a long shot.
We’ve already increased his daily medications and cellcept levels. Hopefully that will help prepare his body so if/when we do more treatment, it will be shorter than normal. It’s not uncommon for kids to have to undergo 6 plasmapheresis sessions (oil changes) in a two week period when their waiting for a transplant. We’ve only done two. We’re blessed.
Kathy and I have decided it’s best not to mention this to the kids right now. Garrett is on such a high by having a zero number from his cell biopsy, and feeling good about yourself is a great healer. It's been kind of a roller coaster to say the least and they need a break. When the time comes, we’ll handle it as we need to.
I just wanted to post this and let so many who are wondering know that this week was a victory in spite of the overall results. Remember, we didn’t backslide at all. The heart is about the same, the cell rejection is gone and the PRA is down, if even a little bit. Any victory is still a victory.
God has control. He gave us a huge win yesterday and we’re going to show anyone who wants to see, just how powerful His mighty love can be. Tonight as I give this all to Jesus, I just look forward to a few days of my kids being free from nightmares, fears and unknowns. They’ve earned it. I love my family so much. I wish I could make the rest go away, but that job belongs to the Perfect Physician. For now, I will keep trying to increase my own faith and remember what Jesus taught us "If you have faith as small as a mustard seed, you can say to this mulberry tree, 'Be uprooted and planted in the sea,' and it will obey you."
JD
Thursday, September 30, 2010
Wednesday, September 29, 2010
VICTORY - September 29, 2010
"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's scheme". God has told us this and we have tried hard to follow His direction.
Our loving God has responded to our pleas and given us a gift so incredible! Garrett's biopsy results, the pathology report from the tissue samples, came back a ZERO! Zero is the perfect number! That means that the rejection from Garrett's body fighting his heart is gone, gone, gone! In June, Garrett's numbers were a high 3, out of 4 total.
I cannot explain the elation we feel tonight. The family is already sleeping peacefully for the first time in many, many nights. Everyone is wiped out. We could not have imagined that the report would be this good. Kathy and I were already trying to figure out if we should even tell Garrett if the report came back with high numbers again. He's been so very scared. Jessi, too, even stayed home sick from school today because she was so nervous. But God blessed us with an incredible gift.
The bible tells us that "He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" . We have renewed strength tonight, when we most need it.
I can tell you that tonight, we are soaring! We realize that this journey is not over. There are roads yet to travel and we still have to wait for the PRA (Panel Reactive Antibody) test to come back. Those are the little devils that mean the heart was also fighting the body and caused Garrett to have plasmapheresis and a number of chemo-type infusions. But with the heart function no worse and the initial biopsy report perfect, we're expecting really good news!
Our God is an Awesome God, even without the good news. But folks, tonight we are resting more peacefully than we have in months. It looks as though now we can just look forward to Garrett's heart just continuing to heal and get stronger.
I will post more when we get the PRA results, but wanted all to know that we received great news tonight. Everyone was in tears as we heard. As I held him in bed tonight, Garrett prayed and thanked Jesus for His love and healing. He prayed and said "daddy, every night I wonder if it's supposed to be my time". "Now I think I'm supposed to be here a while". Pretty fantastic words from a pretty fantastic boy.
To all of you who truly deserved a personal phone call tonight, I apologize. I was selfish and enjoyed my time with the family, soaking in the best news we've had in months.
God bless you all, and thank you for the prayers which He heard and answered.
Tonight, we continue to wrap ourselves in His armor. We're ready for battle. Here's to victory again tomorrow!
JD
"
Our loving God has responded to our pleas and given us a gift so incredible! Garrett's biopsy results, the pathology report from the tissue samples, came back a ZERO! Zero is the perfect number! That means that the rejection from Garrett's body fighting his heart is gone, gone, gone! In June, Garrett's numbers were a high 3, out of 4 total.
I cannot explain the elation we feel tonight. The family is already sleeping peacefully for the first time in many, many nights. Everyone is wiped out. We could not have imagined that the report would be this good. Kathy and I were already trying to figure out if we should even tell Garrett if the report came back with high numbers again. He's been so very scared. Jessi, too, even stayed home sick from school today because she was so nervous. But God blessed us with an incredible gift.
The bible tells us that "He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" . We have renewed strength tonight, when we most need it.
I can tell you that tonight, we are soaring! We realize that this journey is not over. There are roads yet to travel and we still have to wait for the PRA (Panel Reactive Antibody) test to come back. Those are the little devils that mean the heart was also fighting the body and caused Garrett to have plasmapheresis and a number of chemo-type infusions. But with the heart function no worse and the initial biopsy report perfect, we're expecting really good news!
Our God is an Awesome God, even without the good news. But folks, tonight we are resting more peacefully than we have in months. It looks as though now we can just look forward to Garrett's heart just continuing to heal and get stronger.
I will post more when we get the PRA results, but wanted all to know that we received great news tonight. Everyone was in tears as we heard. As I held him in bed tonight, Garrett prayed and thanked Jesus for His love and healing. He prayed and said "daddy, every night I wonder if it's supposed to be my time". "Now I think I'm supposed to be here a while". Pretty fantastic words from a pretty fantastic boy.
To all of you who truly deserved a personal phone call tonight, I apologize. I was selfish and enjoyed my time with the family, soaking in the best news we've had in months.
God bless you all, and thank you for the prayers which He heard and answered.
Tonight, we continue to wrap ourselves in His armor. We're ready for battle. Here's to victory again tomorrow!
JD
"
Tuesday, September 28, 2010
Biopsy - Sept. 28, 2010
Garrett had is surgery this morning for the long anticipated biopsy. It’s not something we’ve wanted, but certainly something we need. We need answers. After months of complicated bumps along the way, he’s overall been feeling so much better so that’s good news.
The doctors just came out and told us that Garrett’s heart isn’t any worse, so we're claiming victory. We were so desperately hoping they’d tell us it was perfect, but the pressures are about the same as they were last time. We just have to wait for the pathology results which will come back tomorrow and hope they're better.
I can’t lie and say I’m not just a little disappointed, but have to remember that this is going to be a long haul. We had hoped and prayed that his heart would show significant improvement, but we have to count our blessings and just be glad that it doesn’t show it getting worse. Basically the pressures of the chambers are still high. The doc told us his heart is a little “stiff”, but as sick as he was this spring, it’ll just take time. Looks like it’ll take at least that year to get all better.
Garrett was pretty upset this morning, but his great buddy Gavin was there holding his hand and helping him stay strong. Gavin is such a blessing to Garrett. But he was very scared, as can be understood. He just wants the doctors to come back and tell us that he’s all well again. In a rare moment of feeling a little down, he cried quietly and asked me “daddy, why can’t I be normal”. Another one of those questions I don’t have answers for. All I could tell him is that our Lord needs him to carry this pain to be a light for others. I truly believe this. I carried Garrett onto the operating table for the 26th time in his beautiful life. I held him and loved him until he fell asleep, as he quietly called out to his cousin Levi and invoked the name of Jesus. Over and over he kept repeating "I love the Lord".
I will be praying so hard tonight, though, that the biopsy of the tissue will show the rejection cells gone. I don’t know what else to say. The journey will continue, so we’ll lean on Jesus and remember one of Garrett’s favorite passages: “I can do all things through Him who gives me strength."
More to follow tomorrow. Be in His peace until then and remember our little cowboy warrior in your prayers, please.
JD
The doctors just came out and told us that Garrett’s heart isn’t any worse, so we're claiming victory. We were so desperately hoping they’d tell us it was perfect, but the pressures are about the same as they were last time. We just have to wait for the pathology results which will come back tomorrow and hope they're better.
I can’t lie and say I’m not just a little disappointed, but have to remember that this is going to be a long haul. We had hoped and prayed that his heart would show significant improvement, but we have to count our blessings and just be glad that it doesn’t show it getting worse. Basically the pressures of the chambers are still high. The doc told us his heart is a little “stiff”, but as sick as he was this spring, it’ll just take time. Looks like it’ll take at least that year to get all better.
Garrett was pretty upset this morning, but his great buddy Gavin was there holding his hand and helping him stay strong. Gavin is such a blessing to Garrett. But he was very scared, as can be understood. He just wants the doctors to come back and tell us that he’s all well again. In a rare moment of feeling a little down, he cried quietly and asked me “daddy, why can’t I be normal”. Another one of those questions I don’t have answers for. All I could tell him is that our Lord needs him to carry this pain to be a light for others. I truly believe this. I carried Garrett onto the operating table for the 26th time in his beautiful life. I held him and loved him until he fell asleep, as he quietly called out to his cousin Levi and invoked the name of Jesus. Over and over he kept repeating "I love the Lord".
I will be praying so hard tonight, though, that the biopsy of the tissue will show the rejection cells gone. I don’t know what else to say. The journey will continue, so we’ll lean on Jesus and remember one of Garrett’s favorite passages: “I can do all things through Him who gives me strength."
More to follow tomorrow. Be in His peace until then and remember our little cowboy warrior in your prayers, please.
JD
Subscribe to:
Posts (Atom)