And now we wait.

Monday’s procedure ended close to 7pm and we were a ball of anxious nerves as we waited for the surgeons to report how things went. When you have complex kiddos you learn to read doctor’s faces and body language, hoping for some cue so you can brace yourself for bad news before the words actually hit. Three of the surgeons came in, and each of them had relieved looks on their faces.

“It went surprisingly well!”

And I exhaled for the first time all day.

There are several reasons why this surgery is not attempted on babies Levi’s size, but the biggest hesitation is that it is an extremely difficult surgery to do on such a small airway. We all collectively seemed thrilled that it went as well as it did. One of the risks associated with the graft portion is the possibility of collapsing a lung while cutting the rib cartilage. The graft harvest went great and they were able to get away with only grafting the posterior side of his airway which means no stitches inside his airway. The body should “accept” the new graft and start to heal around it, locking it in.

The two outside incisions are healing very well;  he will have one large scar across his abdomen on his rib cage and one medium sized one on his neck. He had drains placed in both to help with the healing process but both have already been removed.

 

 

So did this surgery successfully open Levi’s airway enough to avoid a trach? We still don’t know, but by the end of this week we should have an inclination.

Levi will be going back to the operating room on Monday for another MLB (throat scope #9) where they will see how the graft is healing. He will stay on the ventilator until Tuesday morning when we will try to extubate him, and it will take several days for the swelling to go down. We will also be weaning him off of sedation and pain meds during that time. Near the end of the week we should be able to see how well Levi can breathe on his own. He will have another MLB (#10) the following Monday.

You may be a visual person like me so let me show you a few images to help you understand our goal with his airway.

 

 

Starting from left to right: the first image is his airway at birth. It is a normal sized airway but the vocal cords don’t move, so when he tries to breathe in the vocal cords collapse and block it. The airway is very small and there is not a lot of room for air to pass through. The middle image shows his airway after the first experimental surgery (the anterior posterior cricoid split). As you can see, it is definitely larger but still just wasn’t quite large enough for him. The last image is from Monday and you can see at the bottom of his airway they have propped his airway open with a rib graft.

Our marker of success will be his ease of breathing at his baseline of normal. We expect him to pull at his ribs and neck a little when he is upset, but we have to make sure he is not going to drop his oxygen saturation during those moments of anger. He will likely still have stridor (squeak when he breathes) but that is something we are hoping he will outgrow in the next few months/years as his airway grows with him.

Right now our goal is to keep him calm so he does not knock his tube out. This is proving to be a challenging task as Levi is not a fan of having a breathing tube shoved down his nose/throat. He has been a little more squirmy and alert as we would like, so this week has been a dance to find a healthy and safe middle ground with his medications. Right now he is on a morphine drip and getting another sedative several times throughout the day.

It has been incredibly difficult to be in Levi’s room this week. There is one side of me that wants to talk to him and engage with him so he knows he isn’t alone. But there is another side of me that wants him to think he is alone so he will close his eyes and rest/heal. It is a battle of me trying to decide if my actions are driven by what he needs versus what my mommy heart needs. But he did give me a few smiles this week which refreshed my soul.

When Levi cries all I long to do is pick him up and comfort him but instead I have to pin down his arms, legs, and head to keep him from pulling his tube out. It has been a difficult week as I fight all my innate desires as his mom to try to do what is in his best interest.

 

 

He has gone through 5 IVs (11 attempts) since Monday. We also had to run an NJ feeding tube down his nostril and into his intestines to try to prevent him from throwing up his feeds and moving his graft.

Levi has officially surpassed big brother Malachi’s record for most consecutive days in the hospital/ICU. Malachi’s record is 112 days and Levi is at 117 and counting. He also tied big brother Malachi’s operating room record this week with both boys reaching 13 surgeries/procedures (26 total).

Speaking of Malachi, his seizures have been significantly worse over the last 24 hours so we are keeping a close watch. He also had some trouble last week with his body temperature and was dangerously close to being hypothermic at 95 degrees. We were able to bring him back up over the course of a few days but are still monitoring him closely. The temperature issues we are attributing to the cold Ohio weather and his quirky brain but I don’t quite know yet what is triggering his big seizures.

Malachi brings us so much joy. While we waited during Levi’s surgery he had me smiling at his silliness… I took a video so you could share in his joy:

 

 

Today the Ronald McDonald House had some furry visitors and Malachi got to meet all three of them. We have a dog at home named Boomer and he has missed petting Boomer so much. He was pretty excited to find some dogs to pet.

This is his concentration face- I love how expressive he is!

 

 

Malachi also got to try a dum-dum sucker this week with help from momma of course. I told him his tongue was blue and that we should send a picture to daddy. This was his reaction when I pulled the camera out. He is such a smart little boy.

God has been working with me a lot this week in many different ways. Earlier on in the week I got a text from a woman whom I had never met. She introduced herself and told me that her mother was in a prayer group that has been following Malachi’s story since he was born and faithfully praying for him ever since. She told me that her daughter was in Cincinnati Children’s Hospital and would be for the next several weeks and asked if we could meet up.

Time these days is a precious commodity as I want to spend as much time as I can with both boys. I feel selfish and guilty even taking time out of my day to eat lunch alone in the cafeteria in between visits. While I did desire to meet this mom and dad, my heart was telling me there would be no time to do so. I replied to the text with an “Absolutely, yes let’s meet up!”, but in my mind I decided there would be no time and it probably wouldn’t happen.

Fast forward to later in the week. This mom texted me again telling me her daughter was going to be in surgery for several hours and she and her husband were waiting downstairs if I had time to stop by. As luck would have it, they just happened to be waiting in the hallway where I walk into the hospital so I was able to track her down.

We exchanged names and she started asking about the boys. My heart felt so heavy as I told her about Malachi’s special needs and Levi’s airway issues and surgeries. She had so much compassion in her eyes as she listened. Realizing I had spent the conversation talking mostly about my children I directed the conversation back to her.

I asked about her daughter and she filled me in on her medical conditions. I then asked her how many children she had. Her reply blew me away…

17. Yes, seventeen children. Eleven of those children have been adopted, and several of them have special needs. And you could just feel the love they had for each and every one of them.

I immediately felt something stirring in my heart- almost as if God was using that exact moment to put my trials into perspective. As I listened to her tell me about her children I couldn’t help but feel a weight being lifted as God reminded me that every family in this building is fighting a battle…some may be bigger than mine and some may be more unique…but I am not alone in my heartache as a parent.

As those thoughts were settling over me my new friend motioned behind me to another mom that she knew that happened to be walking by. She came over and started talking about her daughters medical condition and joined our little circle of conversation. And yet again, another mom joined our group with her young daughter in a wheelchair. Here we were in the lobby of the children’s hospital, all with children fighting battles much bigger than they ever should have to face.

But in that little circle I saw strength. I saw hope. I saw the same things I see when I look in the mirror each morning…determination, endurance beyond belief, and most importantly a love for our children that drives us.

As I listened to this casual conversation about CT scans, surgeries, shunts, hospitals around the country, procedures, I couldn’t help but smile and thank God that he sent these men and women into my path. They reminded me that sometimes the devil can trick us into thoughts of despair.

“Your life is so much harder than everyone else’s.”

“You are too tired to continue clinging to hope like this.”

“You are weak. Just give up and give in already.”

And as I sat in that circle of warrior moms and dads I mentally wrapped up my pity party and chose to focus on the love that was in every mentally and physically exhausted, blood shot, but hopeful face. I dwelt on the thought that if I had to do this all over again, I would do so in a heartbeat to give my son the best life I possibly can.

As I processed those faces later that evening 1 Corinthians 13 came to mind. It tells us what true biblical love is meant to look like. If you have never read it before, I encourage you to google it now and strap yourself in as it will blow you away.

But I want to focus on the part that burned inside of me as I recited it in my head:

“It (love) always protects, always trusts, always hopes, always perseveres. Love never fails.”

This entire four month battle has been done entirely out of an unconditional, inexplicable love that I have for my son…this precious gift from God. As with all of God’s children, Levi has a purpose on this earth and I can’t help but imagine what that special God given task may be.

I found myself overwhelmed with love showered down from God himself as He reminded me that the same love that burns inside of me for each of my boys is just a fraction of the love He has for me. God wants to give me the desires of my heart…He wants me to smile as I listen to Levi’s effortless breaths, and He wants to me cheer as I watch Malachi boldly run across the room…and I firmly believe that one day I will see those desires fulfilled.

But I also hear Him tell me “My daughter, my plan and MY desires are so much bigger…just you wait and see what I am about to do.”

This week I was reminded of the miracle God performed through Elijah on Mount Caramel from 1 Kings 18. The prophets of Baal and Elijah had a contest. They would each prepare a sacrifice and pray to their god(s). The god who would answer with fire on the sacrifice was the one true God.

The men who worshiped Baal went first. They prayed, chanted, cut themselves trying to get the attention of their false god. No fire came.

When it was Elijah’s turn he had the men pour four large jars of water on the sacrifice and the wood underneath it. Then he had them fill up the jars and do it a second time. Then he had them do it a third.

Here is what happened:

³⁶ At the time of sacrifice, the prophet Elijah stepped forward and prayed: “Lord, the God of Abraham, Isaac and Israel, let it be knowntoday that you are God in Israel and that I am your servant and have done all these things at your command. ³⁷ Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

³⁸ Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

³⁹ When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”

As I read this story I couldn’t help but marvel at the ways of God. He could have easily sent fire down to burn up the sacrifice right away. But He took a situation that- by itself- would have been miraculous and He made it even more magnificent.

Each bucket of water tossed on that bull made it more and more unlikely that the fire would consume it. Each bucket created more doubt in the eyes of the unbelievers. Each bucket gave them confidence that the miracle would never happen.

And it was after He drew the attention of a crowd of unbelieving, doubting men that He sent his power to do the unthinkable.

As I look at our life I can’t help but feel that these trials we are going through now are the buckets of water. We were drenched with Malachi’s untimely birth. We are sopping wet with his physical limitations and hurdles in life. Then more rounds of the buckets came with Levi’s birth. Each time we are doused with water our miracles seem less likely to ever take place.

But oh how I long for the day that God decides it is time for His power to be made known through the miracles He performs in my boys. And may He choose to do so in such a way that it brings the unbelieving to their knees in worship to Him.

I believe with all of my heart that Levi will verbally share with others the goodness of our God. And to see Satan trying to steal his voice affirms that in my heart even more.

So as we continue this fight we will strap on some goggles and brace for the buckets, believing that through our story others will undeniably cry “The Lord—he is God! The Lord—he is God!”

And with help from God I will strive to continue to protect, trust, hope, and persevere.

Because LOVE NEVER FAILS.

 

Much love,

Leah