Crushing and Beautiful

I had just finished working out. My body was dripping with sweat and my legs were about to start a revolution against me so as to never have to work out again.

I grabbed my Gatorade and sat down in the floor, leaning back against our love seat.

The house was quiet.  Yes, abnormally quiet for a house that normally teeters on the brink of destruction with me and five sons for whom Sarah is our only saving grace.

But alas, she wasn't home and neither were any of the five little Indians. They had traveled for some time away to Virginia to visit family, allowing me some time to write.

My heart still deciding whether or not it wanted to keep beating after the workout I just did, my phone rang identifying the call coming from "Sarah Cell."

When I answered, the words she said would commence a second round of what would be, in the words of Charles Dickens, the best of times and the worst of times.

Sarah had received a phone call from Dave, who wears a number of hats but serves as the transplant coordinator for pediatrics at Duke University Medical Center. A donor liver had come available for Micah.

Micah had been placed on the waiting list in March, just about a month after Titus was born and a short 7 months after we had welcomed home our fourth son Malachi. Now, Micah would have a second transplant.

We like to keep things quiet and easy around our house if you didn't notice!

So began another crushing and beautiful journey. 

Crushing as the emotions came while thinking about the family who walked through death, though giving so someone may gain life. The complications that brought four additional emergency surgeries. Watching your 7 year old boy who had entered the hospital so healthy and vibrant struggle and endure what I'm not sure I could.

Beautiful as our family gathered and the family of Jesus prayed and supported. Beautiful to see how God wastes no ounce of suffering, but can use even the vilest of times and darkest of experiences to display His goodness and glory. The continual pruning work the Father does in my heart and life. But what an amazing day, after 60 days, when Micah walked out of the hospital with me to get into the car and go home.

It has been a year since that phone call. Tomorrow will be a year since the actual surgery.  God has, as always, been abundantly faithful and gracious beyond what we could ever deserve.

If you are reading this post, chances are you were part of that journey. So today I want to express deep gratitude on behalf of our whole family for your prayers, love, and encouragement during those days. Words cannot express what we would like to convey.

August 3 Update

The last update I posted has been a few weeks back now. My failure to do an official post wasn't so much for lack of desire as for lack of information.

Micah has been sick. He's been up and down, but more down than up. Unfortunately, there's been too little information about why and even more troubling no way of determining what to do about it.

On Friday Micah had a liver biopsy. It was almost the liver biopsy that didn't happen. The results came back showing inflammation in the liver consistent with rejection. In the grand scheme of things, it is mild. Micah has been receiving powerful doses of steroids the last two days to knock his immune system down to curb the rejection.

Micah's bilirubin level was down by 2 points at last check. We celebrate that and hope this indicates the steroids are addressing the rejection and helping his liver function better.

He has been receiving nutrition in his feeding tube that was inserted Friday as well. Micah's calorie and protein intake have been below what is needed to maintain and certainly far lower than what is needed to replenish what he's lost. The tube is necessary evil for him. It isn't comfortable and he wrestles with the discomfort of it. However, it appears to be giving him the much needed nutrition.

Today has been a better day than the past few. Perhaps it is the nutrition, perhaps the treatment of the rejection, perhaps the blood transfusion from yesterday, or maybe the mix of all the above. He even enjoyed a few moments when his two younger brothers showed up to visit. But then again, who couldn't Titus and Malachi make smile.

We are grateful for your prayers. I am grateful to have had the opportunity to be back at Refuge Church and preaching this morning for the first time in 5 weeks. It was also a joy to have the people gather around to pray for me, our family, and, more importantly and specifically, Micah.

A Step Down

I can hardly fathom that it has been two weeks since we first arrived at Duke waiting for Micah's new liver.

Oh what a course of events over these last two weeks. We have ascended up to moments of great celebration only to plummet down to heartbreak and uncertainty.

Micah's had 5 surgeries over these last two weeks, including the transplant surgery. He's had blot clots and a bile leak. Five different times he's laid on an operating room table to be opened; an incision that took 37 staples to close.

The heart struggles to see such pain for a child. The mind wonders how much that little body can endure.

Our family has remained confident that God is able to bring healing as we prayed. What we can never know is whether God will answer our prayers in the way that we desire for Him to so. There were definitely times our hearts felt crushed, uncertain as to what God was doing and what lie ahead.

On Saturday, Micah began to make remarkable improvement. Doctors demonstrated their confusion as to what made the turnaround. One doctor asked Sarah if she had done anything (I guess thinking she had a magic wand or secret medical training). Another joked about the therapeutic CT Scan Micah was given that must have brought some change of course.

We know better. We will not offer our praise or give credit to another. The fervent prayers for Micah petitioned the Almighty God to act on his behalf. All credit goes to Jesus who is our Healer in ways far more than we can describe.

After a couple days of great improvement, Micah is talking more, eating Popsicles and crackers, drinking juices, beginning to walk more and more, and returning to life before this transplant. Today he was moved out of the PICU and into a step down room. We don't know how many more days we will be here, but we are grateful for the clear hand of God who has demonstrated Himself gracious and strong.

We don't have a timeline of when we may go home. As much progress as Micah has made, there are still items that are being monitored and we hope will show significant improvement soon. We hope this trend of improvement and healing continues, though we know from our journey you never know what a day will bring.

Thank you for praying, as you have clearly been part of what God has done in our family.

Whew!

My summary of the last few days, beginning around 6:30 PM on Monday, would be one word: Whew!

We knew Micah was listed to receive a new liver, but we never knew when.

We knew having a transplant comes with many challenges, but we never can tell what they will be.

We knew that God has always shown Himself mighty, but we hoped it wouldn't have to occur as it did.

On Monday evening around 6:30 PM, I received a call from Sarah who was in Virginia visiting family with all our boys (minus me who was still in Raleigh). Her first words were: "So Dave just called from Duke." Dave is the transplant coordinator for pediatrics. There was no guesswork to figure out why Dave from Duke had called. But she continued, "They have a liver for Micah." 

Immediately Sarah began to journey back to North Carolina and to Duke Hospital. I began preparing to get everything together on my end to meet them at the hospital.

We all arrived at the hospital at around 10:00 PM Monday evening. Micah was admitted and work began to prepare him for the transplant that didn't begin until 6:00 AM on Tuesday morning. The surgery ended in the late afternoon.

An ultrasound would be done of the liver each day for at least the first few days. The Tuesday night ultrasound reading came back showing no flow in the portal vein. Micah's previous portal vein clotted off in the first year of his last transplant. This is really what started us down the road to where we are today with a second transplant. A CT Scan confirmed a clot had obstructed the portal vein.

I had traveled home to get some sleep when Sarah called at around 2:00 AM to tell me. One of the longest drives I've ever had back to Duke took place early Wednesday morning. Micah was heading into emergency surgery to hopefully remove the clot. Clotting was removed and flow restored. The bile duct was also repaired that showed some leakage. Steps were taken to try to fix what may have caused the clotting.

Two follow-up ultrasounds showed a small clot still in the portal vein though blood was flowing through it. A decision was made to go back to the operating room again to remove this clotting. This was done successfully and the vein has continued to remain open as of right now.

In the meantime, our oldest son Isaac celebrated the entrance into double digits on Wednesday. In the middle of having Micah operated on twice, our family gathered in the PICU waiting room for pizza and cake to celebrate his birthday.

Today Micah has rested most of the day, getting his breathing tube out this morning. We continue to pray for the portal vein to remain open and healing to occur timely and well. 

We cannot express enough our grateful we are for your encouraging words shared, prayers offered on our behalf, and visits with us and our family. Please also take time to give thanks on our behalf for God's favor that He has poured out in answering our prayers. May we be like the one beggar who returned to give thanks to Jesus for the healing Christ had given. My heart is overwhelmed by His goodness and grace. I give Him thanks.

A New Liver He Shall Have

I'm writing this post as Sarah and Micah, along with our two youngest boys (Malachi and Titus) and Sarah's parents, travel from Virginia back to North Carolina for us to meet up at Duke Hospital.

Today at around 6:30 PM we received that long awaited call from Duke saying they believe they have a liver for Micah. The liver will arrive later this evening and the surgery will likely not take place until midnight or later (probably later).

There is a possibility that the surgery would not take place if there was something with the anatomy of the new liver or with Micah, though we are not anticipating this will be the case.

So while in the coming hours and days there may be other needs to share, our greatest request is that you would pause now and as often as it comes to mind and ask the Father for favor upon Micah and the doctors and medical team.

1. Pray for God's peace to fall on Micah.
2. Pray for God's strength and grace for Micah's mom, dad, brothers, grandparents, uncles, aunts, cousins, family.
3. Pray for God's power to strengthen Micah's body.
4. Pray for God's direction in guiding the doctors, nurses, and medical team.
5. Pray for God's healing to allow Micah's body to receive the new liver (now and in the future) well without significant complications.
6. Pray for God's comfort for the family who today mourns the death of their loved one as we give thanks for God's provision and timing for Micah.

We will seek to update as we are able. For more immediate updates, you can follow me on Twitter or read the Twitter feeds to the right.

Thank you for praying for us and Micah.

Micah Update: We Wait

Three months ago Micah was listed on the liver transplant list to receive his second liver transplant of his short 7 year life. We continue to wait. There's no way to know when the surgery will take place. And certainly the events that precipitate the availability of a liver are difficult to think upon.

Micah continues to do well most days. He continues to face more regular fatigue. But he completed baseball season alongside of his brothers, Isaac and Ethan. They are all three great at helping care for and play with the two little brothers, Malachi and Titus.

He continues to have surgery on his mind everyday. There's rarely a day that goes by that something doesn't trigger a conversation or some statement related to the wait or the surgery to come. With visiting grandparents this week, it simply came up when he told me they would stay longer if he had his transplant.

Please continue to pray for patience in the waiting, strength and comfort for Micah's body and heart, and trust in the perfect will and timing of God.

I would additionally ask specific prayer for Isaac and Ethan. They have lived these circumstances related to Micah's health for the majority of their life. They don't really know a time when it wasn't part of our journey, our story, and God's work in and through us. However, this time they face the future and the events to come with greater understanding. They know the risk for Micah and the cost to another child and family. Isaac shed great tears the other night as he verbalized his fear, sadness, and struggle with both all of this.

We are grateful for your continued prayers for us, our family, Micah specifically, and for God to accomplish, as we have always hoped, what will ultimately bring him the greatest glory by displaying and declaring the good news through this.

Micah and Peyton Manning

You have to know by now I root for the true "UT" as in the University of Tennessee. And you probably already know in spite of all my efforts to do the godly and righteous thing of raising my boys to bleed orange I have only had very limited success.

Micah is my one bright spot at least in football season. In basketball season, he wears some very babyish shade of blue for some local team. But in football season he trades that in for a much manlier color of orange.

So this past week it was a fun moment for Micah and I as we talked about liver transplant and his new score to relate that to Peyton Manning (now QB for the Denver Broncos, wearing #18).

Micah has been on the transplant recipient list for a few weeks now. However, he was initially listed at -6. After a letter of exception was written, Micah's new score puts him and Peyton Manning together at #18.

This new number for Micah will be good for the next 3 months (till July 4).  It is expected that with that score and where it places him on the transplant list that he will receive a new liver before July 4. No guarantee and certainly no way of knowing when this will come.

He continues to do well right now. He is playing coach-pitch baseball on the same team with Ethan. Both are gearing up for the first game next week, while Isaac played his first kid-pitch game last night. There's a new level of respect for my mom who juggled a minor league, little league, and senior league baseball player all at the same time growing up.

Micah does really well most days talking about what is to come. Some days are harder than other days, however, and last week there were tears and sadness during one conversation.

Thank you for continuing to pray. I will continue to post as updates are available.

Always Be Ready

I learn so many valuable lessons from our kids. Sometimes it isn't so much a learning of something new as a reminder of something old.

As you may already be aware, our son Micah has been listed on the national transplant list for a liver transplant. This will be his second transplant.

The transplant could come at any time. Even in the last two weeks, there was a liver he would have received but the size was not a right match. Every day we live with the reality that the call could come for us to make the journey to Duke Hospital for Micah to receive his new liver.

This morning Micah took a suitcase and began packing his things so he would be ready. Every time the phone rings, he is adamant that we answer it because, as he says, "It could be Duke!" There seems to be no day that passes now that the anticipation of this doesn't come up in conversation in our home, outside our home, and even with complete strangers.

It has been a deep and powerful reminder of how we can begin to live without urgency and expectation. Jesus made a promise and He always keeps His promises. He promised He would return for His children to take them home to be with Him forever, receiving the reward of their labor. In Matthew 24, He emphatically tells us to always be ready because "in such an hour that you think not, the Son of Man will return."

Am I living with the same expectation that any day and every day could be the last day?

Do I anticipate Jesus returning, as He promised, as though it could come today?

Are there things I've left undone? Words I've left unsaid? Acts I've yet to fulfill? Love I've failed to communicate and show? Gospel conversations I've avoided?

The truth is that the call could come today. Jesus could call all of His children to come home never to return here or leave His presence again. We must always be ready. We must live intentionally, passionately, and urgently. Are we really ready?

Re-Transplant

You read the title of this blog post right. Our son, Micah, is facing in the coming weeks (or months) a re-transplant.

The back story, in case you're not familiar, is that Micah was born with a rare liver disease that required him at 7 months of age to undergo a liver transplant. In the first two years that followed, Micah had several complications, not limited to, bile duct blockages, blood clots, and the cancer of transplant patients (PTLD).

At that time there were complications that occurred that we knew would one day have an impact that would have to be addressed. Over the last two years Micah has experienced further issues as a result. Primarily, the clotting of his portal vein years ago has now lead to issues with his lungs, spleen, and more.

In the words of the transplant surgeon, the only "medical option we have to address these issues is a re-transplant."

On Friday of last week we finished all our tests and labs. This week Micah is to be presented to the team at Duke for approval for a transplant at Duke. Insurance will then be contacted for approval. Then, probably after our fifth son arrives (any day now), Micah will be listed on the UNOS Donor Recipient list. From there, we will wait for what could be days, weeks, or months (but hopefully not years).

This blog actually began as a result of Micah's first transplant. Therefore, I am sure that I will be posting here along the way. You can sign up to follow by email, receiving notification when there is any new post, by using the Follow By Email function to the right.

We have been blessed from the very beginning of Micah's life with such love, support, encouragement, and assistance. Most of all, we have seen God's power displayed and largely a result of your prayers.

Again, we simply ask for you to pray for Micah, his brothers, his parents, and his family as we prepare for the days to come. Even in this, we know and we pray that God will be glorified.