Update from Mom

Zane, my beautiful boy, will be getting his kidney from a man I have loved for nearly sixteen years.

I have been overwhelmed with emotion over a lot of things in my life, but nothing can explain the emotion I feel when I think about two of my favorite people and the fact that are going to be having surgery at the same time. I’m anxious. I’m excited. I’m thankful. I’m blessed. 

Disclaimer: If you see me that day and I don’t talk much please don’t take offense. I will be a mess until I know they are both out and okay. If I walk away and want to be alone please don’t worry and please let me be. Know that I love you.

 

Zane was diagnosed with this disease (FSGS NPHS 2) in fall of 2016 when he was only 1. This disease has been such a rollercoaster. My heart has been overwhelmed with gratitude toward our church family, our friends, and our family. Our family has felt so many blessings, that I am not sure we will ever be able to explain how much it means to us.

There is a lot of people that has helped us get by over the years.
But, the one and most important is God.

Without a doubt I don’t know where I would be without God. I would be mad.

I’m not mad. Zane will have an amazing Testimony from all this and I CAN NOT wait to have a front row seat to it.

There is this new song By Big Daddy Weave that I hold close to my heart right now:

“I don’t understand the sorrow
But you’re calm within the storm
Sometimes this weight is overwhelming
But I don’t carry it alone
You’re still close when I can’t feel you
I don’t have to be afraid
And though my eyes have never seen you
I’ve seen enough to say

I know that you are good
I know that you are kind
I know that you are so much more
Than what I leave behind
I know that I am loved
I know that I am safe
Cause even in the fire to live is Christ, to die again
I know that you are good
You are good
I know”

 

How true is that? There may be a LOT going on in your life. You may be experiencing a great loss, your kid may be sick, you may be going through something that is mentally so hard, but whatever it is YOU KNOW THAT GOD IS GOOD! AND KIND! And that you ARE LOVED!

You know, as a believer, that no matter what, at the end of your time here on earth, you will be with GOD forever! How amazing?!  

We know that Zane will experience, and has experienced harder things than most people can even imagine. We know, because medically we are told, he will experience several more transplants in his life. We know he will have to battle with rejection of his kidney the rest of his life. We know that there is scary side effects of these drugs he will be on. We know all the scary things that can happen when you do get a transplant.

But, what else do we know? God is good and kind!

 

The logistics of the surgery, because we’ve had several ask. This is the plan on what will happen.

Zane will be getting his kidney from his daddy on February 25th.

Zane will go into the hospital the day before, for pre-transplant labs, chest x-ray, and he will be administered three different medicines via IV to lower his immune system quite a bit so his body won’t reject this beautiful kidney his daddy is giving to him. He will be in a regular room while this happens.

Kirk will go into the hospital early in the morning on the 25th. The plan is to have it done laparoscopic, but it will still be quite painful for Kirk. I will be with Kirk before he goes to surgery. Kirk’s surgery will take around 5 hours. Someone will stay with Zane while I am at the hospital with Kirk. The plan is that Kirk will go home the next day.

The plan will be that Zane will go into surgery sometime before lunch. Zane’s surgery will take about 4-6 hours. He will be in PICU for a few days and then regular floor. They are guessing a total of 10 days in the hospital, but that is a guess because every patient is different. We are asking for no visitors for Zane. Please. His immune system after surgery will be shot. And it’s flu season. If you want to see Zane, text or call and I can set up a Facetime. 

When we get home, we still will not want any visitors until further notice.

(I have been asked if his disease will reoccur and the answer is we do not know. With regular FSGS there is more than a 50% to 70% of reoccurance. It’s super high. It’s super sad. However, Zane has the genetic version of FSGS meaning his precentage is much lower. It has happened. We are praying EXTRA hard Zane will not be in that precentage!)

We are thankful for our COTA team that is going above and beyond for our family and we hope to see you at the Pancake Breakfast at Holland Chapel on the 16th. Click on Events for more info. Thank you! 

 

Date: February 16, 2020
Location: Holland Chapel Family Life Center

 

 

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” “Be strong and courageous. Do not be afraid or terrified because of them, or the LORD your God goes with you; he will never leave you nor forsake you.Zane with his Dialysis Boxes

 

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