Well, here we are...7 days after transplant and Lincoln is doing great! Tuesday we did something we have never done before....we left the ICU and went to the floor! Lincoln is off all of his IV meds! There is a little bump in the road however. A few days after we started his feeds again, we noticed a not-so-normal fluid coming out of his chest tubes. To our disappointment, we all knew instantly what it was...another Chylothorax! I'm not going to explain it in great detail (if you want to know more, look at the previous post on June 6, 06...he had a Chylothorax after his 1st surgery also), but it just means he will not be able to eat for 2-4 weeks and his painful chest tubes will have to remain in for that long as well. In the big scheme of things, this will not affect him or his heart...it will just be a longer and more painful recovery...not to mention he will be hungry! Lincoln's color, blood pressures & sats are all normal...Praise God! Wednesday was a HUGE day...Lincoln went right back into the cardiac cath lab for a biopsy on his heart to see if he is rejecting. He was intubated again and they inserted a catheter into his heart in order to take a very small piece of his heart muscle. They then tested the specimen to see what the cells were doing and see if his body was rejecting the heart. This was scary for 2 reasons: 1. he just got out of the ICU from having a heart transplant! 2. The unknown prognosis from the biopsy. Well, he did great in the cathlab and yesterday they told us that there is no rejection so far! He will need another biopsy in a few months. Other than that we just have to sit tight and let Lincoln heal and make sure he is getting his list of about 25 medications every day. Once the Chylothorax heals and he can eat again it should only be another 1-2 weeks until he can be discharged. The Dr's still want us close to UCLA for the next 2-3 months after discharge. We will most likely need to stay at the hospital's hotel across the street because Lincoln will be in and out of the hospital for check ups every week. We will continue to keep you updated with info! It's hard to get to a computer now that we need to stay with Lincoln in his room in the hospital...so bear with us. If there are any questions that you have been thinking about asking that we have not mentioned, go ahead and ask them in your comments. Be praying hard...he still has a long way to go! We love you all! J&K
15 comments:
Thanks soooo much for all the pictures and updates. Praise God that he did well with his biopsy and there is no rejection. We were praying hard the last couple days. Much rejoicing in our household. I am so sorry to hear about his chylothorax. That was one of the specific things I was praying about cuz I remember it happening after his first surgery. Bummer! Will pray for quick healing and no collapsed lungs when they finally get those chest tubes out! While they're still in, do you get to hold him much? Also, howz his oral aversion? Is he drinking from a bottle or is that on hold til the chlylothorax heals? Will continue to pray for your family as well as the donor family. We love you all and can't wait to see you again (can't believe you postponed our visit with a transplant. If you don't wanna see us, just say so--haha :).
Michelle
Thanks for the great news!!! We will keep praying.
Scott & Jenny
Praise God! I've never even met you, but all of the Foundations SS class has prayed for you for months. We will continue to pray for healing.
I loved all those beautiful pictures...
he looks fantastic...
he's such a little soldier boy!!
I am in tears... tears of joy that is!!!
Oh you guys...
We're soo happy for you and the family.... he's so special...
we just love him so much....
Too bad about that chylothorax...
same thing happened to Matthew... and it was such a bummer!!
25 medications!! HOLY COW!!
I would be curious what those drugs are later on.
You are always in our thoughts and prayers...
THANK YOU SO MUCH FOR AN UPDATE!
GOD BLESS YOU ALL!
Thank you for the update and the wonderful pictures. I'm sorry that he is having that set-back but how wonderful that he is not rejecting. He looks so happy.
You are still in our prayers.
Praise God! So happy to hear about the biopsy results. We will add to our prayers quick healing from the chylothorax. We are excited for what God is doing. Thanks for all the pictures and updates,
The Branhams
We are so thankful to God - - - what a mighty God we serve! We will continue to pray for both of you and for Lincoln. To look back over your blog and see all the wonderous things God has done and is doing is a HUGE testimony to His greatness. Know that we are praying and thinking of you! May God continue to pour out his blessings! Thank you for your continued updates and pictures - he is adorable!!!!! He is quite the little trouper!
Thank you so much for letting us see his precious face again! I know that it must be difficult to keep up the blog, but we are all so excited when you are able to give us info (and of course pictures).
You have no idea what a faith builder this has been in our family. We've been praying daily that "the doctors would have the right tools to fix Lincoln's heart" (those are Isaac's words). We now thank the Lord many times a day for Lincoln's new heart. We will pray for continued healing in his body and strength and energy for the two of you.
Thanks again for allowing us this window into your lives. It's a priveledge to watch the Lord work through you.
Amy (for the Duecks)
Yeeeeaaaaaaaaaaaaaaayyyyyyyy!!!
We LOVE pictures!!!!!
He is soooooooo adorable, every single one!!!! It is so wonderful to see the mighty work our Lord has done in Lincoln's life and in all of ours, as we pray for that little guy, and see answered prayer on a regular basis. Our God is soooo good.
We will continue to pray for his chylothorax, that it would heal up quickly and that he would be able to eat again. Also, for the donor family as reality is, by now, probably sinking in.
We see the brightness in Lincoln's eyes. He has the most precious face. I can't wait to hold him in my arms. Even though he is your baby, Josh and Kristen, he's OUR baby too. We all have a special place in our heart for Lincoln. What a gift from God.
Hope you both are getting the rest you need. Love you so much,
Linda
Hi Josh and Kristen,
I am rejoicing with you and the entire family in Lincoln's recovery so far with his new heart! I love the pics, especially the one with him giving a "high 5" to you, Josh. I also love the one of Lincoln with Gramma Vicki. Please give her a hug from me.
When I shared with our Bible Study gals on Wednesday night that Lincoln had a new heart, they were soooooooooo excited and thankful to our Awesome God for all He has and is doing in Lincoln and your family. They rejoice with you. They are also praying for the family who gave the heart from their little one. The entire prayer group on email is rejoicing as well.
Will continue to pray for all of you in these days of waiting for Lincoln to be able to eat again and for your transition to the hotel. God is showing you His love in so many ways.
Love ya much,
aunt donna :-) Psalm 18,32, and 40:1-3
Hi Josh, Kristin and Lincoln,
Thanks so much for the update...evening though we get it from your Mom (Vicki). Just a couple of days ago, completely out of the blue, Ethan said to me, "Mom, lets talk about Lincoln." So we did! How we love that Lincoln Boy!
Tell Lincoln His Cadence Again ~
From Auntie Danielle
Lincoln Michael Oh So Fair
Sportin' A Look With Spikey Hair
Feisty Guy Whose Always Winkin'
Oh We Love Our Baby Lincoln!
We'll continue to pray pray pray! We love you all and can't wait for you to come home!
Danielle (For Da Bohr's)
We are SOO happy to hear that he's healing well from the surgery and is not rejecting. This is wonderful news!
We are praying for you guys and praying that he continues to do well.
Nathan is well and healthy too :-)
we are keeping you in our thoughts and prayers for a good recovery! I am sorry he got cthorax izzy had it too, they let her have a specail diet protagen formula while she had it, no ffod for a week or two then the prortagen. it smells awful but gave her soemthing in her tummy?
What a long uphill battle BUT you are all making it. We are so glad to get the good news.
Thanks,
and our prayers are with you still.
ESA/Love INC
Thank you guys for the update. We are just excited with the progress he is making after such an extensive surgery. Lincoln is a trooper. Hopefully we can get down their to visit again sometime soon.
We are continuing to keep you all in our prayers..
The Taylors
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