Bennett's "SuperSibs" trophy...for being a fantastic sibling!Matt and I are doing our homework and reading the Pediatric Transplant Handbook that UCLA provided to us. We feel like we have to be prepared NOW, because we could literally be called at any moment. It’s scary and daunting reading about not only the very complicated surgery, but all the things we will have to be cautious of the rest of Carter’s life.
The surgery will take 5-12 hours, and it is common to go back to the PICU after surgery and then back into the OR a few times for adjustments. The doctor told us they can do heart transplants with their eyes closed, liver transplants are a whole different ballgame. There is so much “plumbing” involved with the liver and very small vessels, and a pediatric liver transplant is that much more complicated because of the size. We can expect to be in the hospital for three weeks, and each day as Carter shows improvements he will get the breathing tube taken out, abdominal tubes for drainage removed, staples taken out three weeks post transplant, etc. The list of meds we will have to give to him once we are home makes our meds now look like nothing. Just in the morning, Carter will have 13 oral meds. And we complain because he fights us taking a few now! I don’t know how we’ll do it. We’ll also have a nurse come to our house and draw Carter’s blood every Monday. And every Thursday we will go to UCLA for more testing and blood work.
Things we will have to worry about and lose sleep over the rest of Carter’s life will be signs of rejection, infection, panicking every time Carter gets a common cold or fever or gets exposed to chicken pox, getting vaccines or being near anyone who has had a live vaccine within 3 months, never having a bird or cat or picking up any animal poop, staying on a low-sodium diet, never having sushi or any raw meat, and the list goes on. Matt and I are educated people, and we are feeling very overwhelmed and under-qualified. This is a lot to take on…luckily, we love Carter A LOT!! We will just look forward to the day when it doesn’t seem like Carter’s care consumes our lives. And I’m sure we’ll adjust just fine. It is just scary though.
In the meantime, we had a good day. Bennett and Matt ran errands and went to Bennett’s soccer clinic. And Carter and I got to walk around Balboa Island with my sister. I wasn’t sure if Carter would last in the stroller or wear his mask, but he did both. It was probably nice for him to be outside too (even though he did think it was so bright out…and he was shaded in the stroller).
We hope everyone has a happy and safe 4th of July!
Happy 4th of July to all the Kipps! So happy you got to take a little walk around our favorite place. Kara and Matt I know this all sounds overwhelming now but just think about how far you have come already. Who knew you would be able to do the things you are doing. Remember how scary the flushing of the line was...now it is no big deal. You will be able to handle all this...you have both done a miraculous job up to this point. You will be fine. Have a wonderful peaceful day tomorrow. Big hugs to your brave little family. xoxo Cindy and John
ReplyDeleteHoly cow. It all sounds very daunting but you guys will take it one moment at a time and absorb it all. Its reassuring that you two are strong together and are there not only for your kids but each other. This will be crucial for accomplishing your homework for Carter.
ReplyDeleteKeep taking deep breaths and kissing and hugging your boys.
Happy 4th of July! I hope you get to celebrate a little today. Sounds like you have a lot ahead. You probably never thought, before he got sick, that he would take meds and handle what he does now. . . I am confident that little guy will surprise you after his transplant.
ReplyDeleteEnjoy the holiday weekend!
Job well done Bennitt Kipp. Congradulations on your sibling trophy. Love and hugs, Julie Weaver
ReplyDeleteWow, that does sound very daunting I can see and I KNOW that you can all do it together. Congratulations to Bennett for his SuperSibs trophy! What a fantastic big brother! It is so good for you to be prepared by reading the information now, as it's so weird that they could call you any moment so then you know what's going to happen and what to expect. You can do it you guys and we are all here to help!
ReplyDeleteLove you,
Shelley H.
Happy 4th of July! Great Job to Bennett! I am ready to help pick up Daphne's for you guys when in LA! I will drop and run, your own version of restaurants on the run LA style:) Have a good day.
ReplyDeleteAmanda
4th of July--hope you guys are finding a little time to relax. This news is completely overwhelming and daunting, you are fully justified to be feeling that way. However, you are facing it with exactly the right attitude: You can do it. Carter can do it, and information is your best weapon and defense right now. My family continues to pray for yours...and though the gift of a liver will be bittersweet in many ways, it WILL be a success. You just have to focus on that.
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Jenny (Wells) Mavros
God doesn't call the qualified, He qualifies the called. It seems a daunting task of taking care of this one angel from God, but fear not, for God will provide all you need to meet this task. He has already equipped you with such hearts of love and compassion, just lean upon God's understanding and fear not.
ReplyDeleteTrust God to guide you in every life decision, trust God to meet Carter's physical needs, trust God to provide you & Matt with the patience this will require. Many, many lessons to be learned from all of this. This humble blog, which I am sure was first designed to keep your immediate family updated, had shown me many lessons I myself must learn. Your family has taught me perseverance in the midst of adversity, it has taught me courage from a young weary warrior, it has taught me more about the power of prayer and faith. So grab a good handful of Jesus' robe and hang on. This blog is more then just a vent or information to family....it is also a blog of the prayer of the saints and a testimony for those lost to find to learn about the love of God and His power. Hang on beloved Kipps, God & CWL have not forgotten...we both are here in prayer & Spirit. Many hugs