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
12 comments:
We are praying for you - and your thoughts on the other family were huge. It reminded me of the ultimate sacrifice one father made for me - in giving his only son. Thank you for your continued testimony and recognition of God's Sovereignty! He is above all and knows exactly what Lincoln needs. I pray he meets all your needs and wraps his arms of comfort and peace around you! We are praying for God to do great things in little Lincoln's life. He is adorable! Thanks for posting pics. I love the one of Kriten reading to him! Know you are loved and prayed for!
So glad to see the update. Lincoln is getting so tall!! The pictures are precious. We miss you all so much. We will continue to keep you in our prayers as you have to adjust to this new way of thinking & praying. Love you lots!!
Oh my! How exciting and scary and what an opportunity to put EVERTHING into God's hands. May God help you to rest in His hands and to put Little Lincoln there too. Yes our prayers are with each of you and all of those people now involved in this circumstance with you as well as those that will be. May you, as you live your life in Jesus, be a light unto your world.
Love, Jan and the ESA/Love INC family
Christine and I will continue to pray for both of you. We care a great deal and your strength and trust in Christ is a testimony to all of us here in SR.
I sent you an email, I hope it went through. Just in case it didn't, I thought I'd let you know you are in our thoughts and prayers. We love you guys!
love ya,
Sarah...John, Madison and Joel
It seems the never ending roller-coaster takes another turn. We can’t imagine what it would be like to absolutely have no idea what tomorrow brings for your child’s well-being. We care so much for your family and are happy for this new opportunity to get Lincoln better, but heart-broken for all the challenges you guys have to face everyday. It is good to know that God’s will all make perfect sense to us, at least someday. We are praying for your daily strength in waking up everyday and facing challenges. We love Lincoln and are excited to see him again. Josh, I think you have had your own twin, he looks scarily close to you. Love you three.
Hi Josh and Kristen,
Lincoln is soooooooooo adorable and he is blessed with a very special mommy and daddy! You have all been much in my prayers and the prayers of many. I sent out this update to prayer team this morning. God has you on a very difficult journey with many difficult decisions to be made. I know He will give you wisdom and strength in each one. Just enjoy every moment with Lincoln and please give him a big hug from aunt donna and keep one for yourselves as well.
Studying Book of Daniel and it is amazing how God took care of the 3 men in the furnace and they came out with no smell of smoke on them as God and they were not burned. God was with them in and through the fire. I was also blessed by Isa. 43 as it talks about God being with us in the fire. Perhaps it will encourage your hearts as well.
I will be praying for you as well as the other family who would be giving a new heart to Lincoln. I know this must not be easy for you but I trust that God will go before everyone concerned and allow His Will to be done with His Grace and Mercy.
Always remember that you are special to me and to the Lord. Would love to be there to pray with you and just give you love and hugs. Please give love to entire family for me.
Love ya much,
aunt donna :-) Isa. 40:31
Dear Josh, Kristen and precious Lincoln-
Please know that you are in my thoughts and prayers, every minute of every day. I miss seeing you and hope to see you soon.
Love, Steph Witham
Hi guys...
He is just the most adorable little baby! I will keep praying for you all. I can't imagine going thru what you're going thru!
We were told that if Matthew were to need a transplant, we would have to come up w/ $100,000 cash before being put on a list.... how did it work for you? Will you be needing a fundraiser? I have a phone number for transplants that helps to get money. It's all so scary.
Terri, Mike & Magoo
WOW! I don't know what to say after reading this latest update. Our sermon at church last week was on fear...something we took away are from the sermon notes was to have "a holy fear of the Lord, an awesome fear...not one that scares, but one that helps us to realize our own unworthiness, and so we need to completely abandon our hearts and souls to him." As Psalm 34 says, "I sought the Lord and HE answered me, he delivered me from ALL my fears."
You guys, I can only imagine your human heart-ache and stomachs sick with FEAR..of the unknown and of what is to come..but GOD IS BIGGER than all of our fears...AMEN?
We continue to lift up that tiny little boy and both of you.
Blessings RICHLY be yours
LOVE YOU ALL
Amber Ferry and family
Hey Guys,
I am at work, so I thought I would look at the blog, and see how my little buddy is doing. We are continually thinking of you guys, and we are keeping the entire family in our prayers.
Hang in there guys and know we are praying for you all....
Love the Taylor's
my nephew is so cute! I can't wait to see you all again in acouple weeks. I'm so glad Lincoln's favorite movie is the "holy" movie from Sydney. Hang in there. God will provide you with all you need.
Love, Auntie
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