There really hasn't been too much excitement to report over the last two weeks. We know you guys are feverishly praying for Lincoln...Thank you! The Dr's are just working hard at trying to figure him out and to keep him stable. He is so touchy when it comes to keeping everything balanced. The slightest little swing in medication or fluid and he gets thrown into heart failure. Even though they have been trying to wean Lincoln off of his medication, they went ahead and started the process for heart transplantation. For the last two weeks Lincoln has had some problems with dehydration and medication weans which indicate that the heart is very weak and that a heart transplant is the only route we will have to take. So over the last week they have been drawing blood and doing tests to check for antibodies. The Dr's presented his case to the transplant board on Friday and yesterday we got the insurance clearance so officially Lincoln has been listed for a heart transplant. I'm not going to get into all of the specifics about heart transplant...but if you would like to know more about it, the organization that handles all of the transplantation of organs in the country is called UNOS (United Network for Organ Sharing) and you can surf their website for more info (see the link section on this page). This is a complete switch from what we know about congenital heart defects. We are entering new waters and we are having to change our thinking in how life will now be after a heart transplant surgery. From experience, we knew what was required for us in order to take care of a child with congenital heart defects. Now we have to change our thinking and adjust to life with a completely different set of issues. As one Dr said to us, "basically we are trading one heart problem with another heart problem". What he means is that with heart transplant...it's not a complete fix. Yes, Lincoln will be able to live an almost perfect life...BUT there are rejection issues, constant medication and evaluation, being near the hospital for a half a year, not to mention he will need another transplant in 10-15 years. Don't get us wrong...we are excited for this to happen, we just have to adjust and adapt to this process. On a more personal note...the information we know about pediatric heart transplant kinda scares us...like the odds, availability, waiting and sickness. We know God is in complete control and we know he works all things together for good, however, our human nature is to worry and it's so hard to trust sometimes. Lincoln could get a heart tomorrow or we could wait for six months or he could never get one. Pediatric hearts are not widely available and Lincoln can't be on these medications waiting in the ICU for too long. Plus, if he gets sick and one becomes available, we will have to turn it down. Although we are so excited as we hear the data about how babies do with new hearts we are just worried about the process getting there....please pray for that. An even more personal note...As we were praying one night for Lincoln to receive a new heart...I turned to Kristen and said "do we realize what we are asking for?" This is a hard prayer knowing what's required for Lincoln. It hits close to home for us knowing the sacrifice it will take for one family. So as we convey our hearts to you...please be in prayer with us not only for Lincoln, but for the family that will give the ultimate sacrifice..the gift of life. Pray for Kristen and I as we go through the ebb and flow of Lincoln's condition and the routine of hospital life...it is getting very old. Also pray that we are able to take care of the constant irritations of life...bills and insurance. Well...other than all of that, Lincoln is as cute as ever and is doing good. Our days are filled with changing dirty diapers, holding him all day and reading the same books over and over and over and over. We kinda got the hint that he was tired of them when on Sunday as Kristen was reading "Brown Bear" to him, he kept peeking over the book to watch the football game on TV. Thank you all for your constant prayers and support...this is an exciting time for Lincoln and we can't wait to see what God's going to do. We love you all! J&K
There really hasn't been too much excitement to report over the last two weeks. We know you guys are feverishly praying for Lincoln...Thank you! The Dr's are just working hard at trying to figure him out and to keep him stable. He is so touchy when it comes to keeping everything balanced. The slightest little swing in medication or fluid and he gets thrown into heart failure. Even though they have been trying to wean Lincoln off of his medication, they went ahead and started the process for heart transplantation. For the last two weeks Lincoln has had some problems with dehydration and medication weans which indicate that the heart is very weak and that a heart transplant is the only route we will have to take. So over the last week they have been drawing blood and doing tests to check for antibodies. The Dr's presented his case to the transplant board on Friday and yesterday we got the insurance clearance so officially Lincoln has been listed for a heart transplant. I'm not going to get into all of the specifics about heart transplant...but if you would like to know more about it, the organization that handles all of the transplantation of organs in the country is called UNOS (United Network for Organ Sharing) and you can surf their website for more info (see the link section on this page). This is a complete switch from what we know about congenital heart defects. We are entering new waters and we are having to change our thinking in how life will now be after a heart transplant surgery. From experience, we knew what was required for us in order to take care of a child with congenital heart defects. Now we have to change our thinking and adjust to life with a completely different set of issues. As one Dr said to us, "basically we are trading one heart problem with another heart problem". What he means is that with heart transplant...it's not a complete fix. Yes, Lincoln will be able to live an almost perfect life...BUT there are rejection issues, constant medication and evaluation, being near the hospital for a half a year, not to mention he will need another transplant in 10-15 years. Don't get us wrong...we are excited for this to happen, we just have to adjust and adapt to this process. On a more personal note...the information we know about pediatric heart transplant kinda scares us...like the odds, availability, waiting and sickness. We know God is in complete control and we know he works all things together for good, however, our human nature is to worry and it's so hard to trust sometimes. Lincoln could get a heart tomorrow or we could wait for six months or he could never get one. Pediatric hearts are not widely available and Lincoln can't be on these medications waiting in the ICU for too long. Plus, if he gets sick and one becomes available, we will have to turn it down. Although we are so excited as we hear the data about how babies do with new hearts we are just worried about the process getting there....please pray for that. An even more personal note...As we were praying one night for Lincoln to receive a new heart...I turned to Kristen and said "do we realize what we are asking for?" This is a hard prayer knowing what's required for Lincoln. It hits close to home for us knowing the sacrifice it will take for one family. So as we convey our hearts to you...please be in prayer with us not only for Lincoln, but for the family that will give the ultimate sacrifice..the gift of life. Pray for Kristen and I as we go through the ebb and flow of Lincoln's condition and the routine of hospital life...it is getting very old. Also pray that we are able to take care of the constant irritations of life...bills and insurance. Well...other than all of that, Lincoln is as cute as ever and is doing good. Our days are filled with changing dirty diapers, holding him all day and reading the same books over and over and over and over. We kinda got the hint that he was tired of them when on Sunday as Kristen was reading "Brown Bear" to him, he kept peeking over the book to watch the football game on TV. Thank you all for your constant prayers and support...this is an exciting time for Lincoln and we can't wait to see what God's going to do. We love you all! J&K
