Hallelujah, we are back in Tennessee! We have been back for a week but I am still trying to get a grasp on our new routines. Now to catch you up on the last two weeks in Carroll land…

Levi struggled tremendously post-op with throat pain and ear pain. I knew this surgery would be tough but I have to admit that the recovery was significantly worse that I ever imagined it would be. Had we not had the gtube we would have most definitely been admitted again for dehydration. He couldn’t even tolerate popsicles.

Levi’s pain kept him from sleeping soundly and all of those factors created the perfect storm for more drama. Levi has cerebral palsy in his ankles and wears special braces inside his shoes to help him walk soundly. Late one evening he was coming down the stairs barefoot and his tired little body couldn’t hang. We didn’t see the start of the fall, just the end of it, and when he got up he was limping significantly. It was late so I got him to bed and figured we would re-evaluate in the morning.

Levi had been complaining about his throat and ear pain, but on that night all of his focus was on his foot pain. The next morning he was limping even more so I took him to an urgent care for x-rays. The radiologist said it was a fibular fracture so he put Levi in a boot and told us to follow up with an orthopedic doc when we got back to Tennessee. The Tennessee doc is planning to repeat x-rays next week to see if it is a fracture on his growth plate and will make a plan for the boot timeline from there.

Thankfully he has started to get his energy back and the boot hasn’t slowed him down much!

Levi’s airway has been settling down enough for us to see that the surgery seems to have slightly helped from what we can tell. I haven’t seen him active yet due to the boot he is slightly less noisy and seems more comfortable/less air hungry. I need to hear him after a long walk to be able to give an accurate report to the surgeons. But I am hopeful!

Malachi has continued to be a rockstar and “the easy” child, which makes me chuckle. He has had the most incredible attitude this month and has been an emotional support for me. We left Ohio and as we crossed over the bridge in Cincinnati he just started giggling the purest, sweetest giggle from the backseat. I asked him what he was giggled at and asked “Are you excited to be going home?” And he signed YES YES and kept on giggling. I love him so much.

We spent our recovery days trying to be as busy as Levi could handle, attempting to keep his mind off of things. We spent lots of time with family which was a blessing.

As a medical momma I am accustomed to caregiving. On a typical day I am continually cycling through medication schedules, feeding schedules, venting (releasing the air in Malachi through his g-tube), and diaper changes. After ten years of those routines they just become a landscape of the day and don’t seem invasive.

But when I added in the post-op care for Levi it hit a level that my sleep deprived brain wasn’t able to handle well. I was setting alarms for every three hours to make sure we stayed on top of his pain. I relied on charting medication and kept notes on each of the boys to make sure I didn’t miss a medication or double dose one. Levi was getting 8 additional medication doses each day for 12 days in addition to his standard 3. And Malachi gets 11 doses of medication each standard day. I also needed to chart Levi’s hydration through his g-tube to make sure we were hitting those needs as well.

So my typical caregiver role existed and the role of nurse was added in. This happens from time to time when the boys get sick, but usually we end up better or hospitalized before we hit the two week mark. In short spurts my adrenaline carries me through but by day 7 I could feel myself starting to waver a bit. Levi also needed me to simply be “mom” and comfort him through some big emotions.

I felt…well…insufficient. Which I know all parents struggle with from time to time, but this round hit hard. My heart and mind cycled through the “why”.

Why do both of my children have to suffer so much?

Why has God given my family the bread of adversity and the water of affliction (Isaiah 30:20)?

Why have I been called to such challenging roles?

A friend sent me a verse last week:

2 Timothy 1:8-9,12 “Therefore do not be ashamed of the testimony of our Lord or of me His prisoner, but join with me in suffering for the gospel according to the power of God, who has saved us and called us with a holy calling, not according to our works, but according to His own purpose and grace which was granted us in Christ Jesus from all eternity…For this reason I also suffer these things, but I am not ashamed; for I know whom I have believed and I am convinced that He is able to guard what I have entrusted to Him until that day.”

As I read those verses some of the words immediately popped off the page at me.

“Ashamed”. 99% of the time I see our challenging life as a blessing from the Lord, but in my weakest moments I will feel a bit of shame creep into my heart and mask the blessings. I am ashamed by my glaring inadequacies.

Everywhere we go we are on display- trips like this recent one remind me of that struggle. I catch myself hearing others narratives about our family, or sometimes even fabricating what I think others are thinking. Sometimes in the medical community when we talk about the boys I sense judgment, as if our lifestyles choices or pregnancy choices caused their struggles. Why else would we have TWO children with such significant needs.

Then there is a small portion of the religious community that still believe that my boys are still disabled because of a lack of faith on our part. Or a result of our sin. And even though I don’t believe that to be true, sometimes the initial shock of hearing those things (often secondhand) feels like an attack and gives shame a moment to wash over me.

Friendships with our family require an immense amount of commitment and effort. It is like jumping on a moving roller coaster, and sometimes we are so focused on the ride we can’t reciprocate the effort it took for you to jump on. And I recognize the one sided nature of a friendship with our family, and I am ashamed by my inadequacies. We receive a lot more than we can give right now. The humility that it requires to simply receive is something I struggle with.

“My prisoner”. This one hit me hardest. I laughed out loud thinking that is EXACTLY how I feel. When you talk about faith you don’t often use the term prisoner because that carries a connotation of an unwilling person, not voluntary. Being bound to something or someone is usually not something we jump at the chance to do.

But if we have truly been crucified with Christ and if it is truly no longer I who lives but Christ in me (Galatians 2:20), then we must also function as He did under the authority of our God and His Spirit. Even when that means we are called to things that oppose our flesh.

In Acts 20 Paul is leaving for Jerusalem where he will face imprisonment. He doesn’t know exactly what is waiting for him, but he says this to the elders:

“And now behold, bound by the Spirit, I am on my way to Jerusalem, not knowing what will happen to me there, except that the Holy Spirit solemnly testifies to me in every city, saying that bonds and afflictions await me. But I do not consider my life of any account dear to myself, so that I may finish my course and the ministry which I received from the Lord Jesus, to testify solemnly of the gospel of the grace of God.”

This week I had to really sort through the concept of feeling like a prisoner within my motherhood calling. And I had to reframe my thinking that my bondage isn’t to motherhood, but rather it is to the will of the Father which I will gladly be chained to. Where the Spirit of the Lord is there is freedom (2 Corinthians 3:17-18).

“Suffering for the gospel”. Sometimes it feels impossible to make sense of suffering. Especially when it happens to children. But having eyes to look beyond the current pain and trust that God’s plans are greater is an essential element of faith in Him.

“Called us with a holy calling”. Wow!! Even the most difficult callings can be holy and Kingdom purposed. I need to start changing out the adjective of “hard” in my vocabulary to “holy”.

“He is able to guard what I have entrusted to Him until that day”. This week revealed that I have not fully entrusted some things to God. I have entrusted a whole lot into His hands, but I was still hanging onto fragments in my convoluted attempts to maintain control. He is God and I am not, and while I say those words and believe them with my heart my actions revealed otherwise. The Lord is for us, not against us (Romans 8:31).

I feel like I just wrote entirely too much, but writing out these lessons and proclaiming them out loud holds me accountable to truly believe them.

Our most challenging moments will always have opportunity to feed something in us. They have opportunity to feed our flesh or they have opportunity to feed our faith. This month I have done both. And I have been reminded that the peace that comes from trusting the Lord is greater than anything I can manufacture.

Thank you for praying for our family. Levi is struggling with anxiety right now on a large scale and needs your prayers. He is having a hard time particularly with his new routines. And the control freak in me relates well with that post-op.

Love,

Leah

This past week has been a blur of activity and information. We made it to Cincinnati late Monday evening and started pre-op appointments on Tuesday with the pulmonologist. We have been working with this same pulmonologist since Levi’s NICU stay there and he knows him well.

As soon as he walked into the room he could hear Levi’s stridor and recognized the change from last year. He had Levi go up a flight of stairs to see what would happen and he was very suspicious with Levi’s level of stridor (loud breathing). He explained that while he does think removing the tonsils and adenoids would help with his nighttime breathing, he did not think they had anything to do with his new noise and work of breathing. He was eager to get into the operating room later in the week to see if Levi’s voice box was growing with him or if there was another obvious cause of the restricted breathing.

As he reminded me, perfect breathing is not the goal. We are aiming for simply “good and safe”. He told Levi, “You my friend are a marvel!”

Due to lots of various factors, and contrary to common sense, I ended up taking both boys with me to Ohio so Malachi was along for the appointments. Even though we have been doing this for years, most of the specialists had never met Malachi! When the pulmonologist came into the room he was drawn to Malachi’s junky breathing and we spent a few minutes discussing some options for him as well (bonus second opinion). He would like to pursue a surgery for Malachi that would potentially reduce his hospital stays for respiratory illnesses; it is called removal of the submandibular glands and ligation of the parotid glands- if anyone has any experience with that one send me a message! But I am definitely interested if we can sort out the insurance battles.

I left that appointment feeling a little discouraged that there wasn’t an obvious solution. We were driving away from the hospital and passed at least a dozen people walking. Levi told me we should pull over and offer them a ride, and I explained that we can’t really do that because some of the people might be good and kind and some of them might not be kind and need Jesus. He processed that response and came up with a big plan…He said “Mom we need to bring people from our church to Cincinnati and we could walk around and tell these people about Jesus- like a mission trip.” I love seeing his heart for others and his love for Jesus.

Thursday morning we checked in for surgery at 7am. I am always thankful for the earlier appointments because there is rarely a delay. Malachi was sound asleep for most of the prep time and Levi was slowly spiraling into an emotional mess. Throughout the hospital stay he successfully insulted the majority of the hospital staff we came into contact with, even holding doors shut to prevent them from coming in.

We had prepared for the chaos by wrapping up several little things for him to open and play with while he waited. New slippers, cheap treasure box toys, etc. But in the end the anxiety won out and the anesthesiologists brought in some of the silly juice meds to help him calm down. I am thrilled to report that he handled the medication well this time around with extra no breathing issues. The surgeon said when they got him to the operating room he was laying down with his butt up in the air and he started giggling so hard that it made the entire room laugh. Praise the Lord for this!!!

The surgery lasted a little over an hour and is done by a team of different specialists. I get called into the conference rooms for each specialist when they finish their part, retuning to the waiting room after each one.

The first one to finish was the pulmonologist. Many of the things he shared were repeated by the ENT so I will skip those for now. But he reported that it didn’t look like Levi was aspirating foods or liquids and his lungs look clear and strong. The weakness and floppiness of his lungs from previous years seems to have improved. They sent off some samples to be tested and we should hear about those soon. So all good news on round one.

The next one to finish was the ENT surgeon. She has worked with Levi since the night we were transferred to Cincinnati when he was just a few weeks old. She knows him very very well and we trust her very much.

She explained that the bone graft that Levi had put in his vocal cords as a baby was holding well and it looked like the airway was growing with him. But she explained that some scarring on his right arytenoid (cartilage at the back of the larynx) and it is tightening up that area and restriction the flexibility of his paralyzed cords. This is the cause of his hoarse breathing and restricted airway.

The options are as follows:

1) Do nothing. He would continue to be air hungry when active and it will likely get worse over time.

2) Remove tonsils and adenoids, which we had already decided to do to see if we could make more room for air to pass to his airway. This would not solve the problem but may buy us some time.

3) Do an arytenoidectomy and laser off the entire right arytenoid. This is a pretty big intervention that would help him breathe more freely but would also likely take away or soften his voice.

4) Do another rib bone graft to open his vocal cords slightly more. This is a surgery that we would to not have to repeat in Levi’s lifetime. It is a tough recovery and a pretty big deal.

So we are working down the list and we are on Option #2. We removed tonsils and adenoids and in a few weeks we will phone conference to see how much it has helped. If it doesn’t help enough we will have to pursue option #3 before next summer.

Often people ask “Did surgery go well?” and I am never quite sure how to answer. Is he safe and recovering, absolutely! But have we checked anything off the list? Not really, as this is an ever evolving condition and treatment plan. The tone this year was slightly different than the last few. Instead of excited and proud the team seemed a bit discouraged that they were seeing new things that needed to be addressed.

And post op he has actually lost some voice quality and volume and his stridor is worse. I am hoping that as he recovers these things will also improve but it is so hard to see steps backwards. Right now I can’t even hear him speak from the driver’s seat in my car.

The surgeon reminded me that Levi was one of the first babies to ever have the original experimental procedure done and they are learning through him what works long term and what doesn’t. There really isn’t a cookie cutter plan for him so we are taking it one year at a time right now.

After PACU Levi was taken to a room on the complex airway floor and it was hands down the best hospital environment we have been in ever. It was so patient friendly and comfortable for parents as well. We have been in some pretty miserable hospital rooms over the years and this one felt like a 5-star resort!

After Levi woke up from surgery and the anesthesia wore off he was feeling great! He even ate a whole meal a few hours after surgery. Nighttime came and he declined a bit as the strong pain medications wore off. He dropped his SATs throughout the night and required some oxygen. Thankfully Jake had not left Tennessee yet and I was able to have him bring the concentrator and a pulse oximeter machine so we would be able to be discharged and continue safe care away from the hospital.

Jake came later that evening and picked up Malachi for the night. Levi woke up dozens of times throughout the night with discomfort, mostly focused on the IV, but by the morning he was safe enough to leave.

We are four days out from surgery and he has been having a rough recovery. We are staying on top of pain meds but with his PTSD he is having an exceptionally hard time with pain management. I am able to keep him hydrated with high calorie formula through the gtube, but we really need to see a turnaround soon.

The surgeon asked us to stay for the full 10 days post op for fear of complications so we are in Ohio until Saturday. We are doing lots of naps and lots of attempts to distract by visiting with local family and running errands. Jake is back in Tennessee to kick off the school year and we are eager to be reunited.

Malachi has been a champ this trip and is always offering his hand to Levi- it is so sweet to see. His seizures have been well controlled (praise the Lord) and he has been so patient through Levi’s emotional swings.

This has been an extremely factual update and I recognize how underwhelming our report is. While I would love to share some of my emotions with you right now I am fearful to…I have everything stored up so I can focus on being a good mom right now in our circumstances. If I even start to open that lid a little I expect I will erupt and I can’t afford to do that right now. Usually with surgery trips I let the emotions hit when I am in my closet and able to expend the energy, and I ugly cry for a good 30 minutes. So until I can get to my closet I am too fragile to share much.

God and I have had a lot of conversations this week. Weeks like these remind me of how much I still need refinement in my walk with Him. It is easy to say that I trust God, but when circumstances slide this far out of my control I recognize that I don’t trust Him as much as I should. I am struggling with a lot of discouragement- not with God but with the walk He has called our family to. There is such a thick cloud of suffering sometimes that I have a hard time I seeing through.

I read this verse the night before surgery and it was a needed reminder to me that we aren’t always supposed to be able to see the path ahead.

Ecclesiastes 11:5 “Just as you do not know the path of the wind and how bones are formed in the womb of the pregnant woman, so you do not know the activity of God who makes all things.”

Sometimes ignorance feels like a punishment. But it also carries such opportunity to be a blessing.

As we drove to surgery Levi started asking all the questions. He asked why HE had to have the hard surgery. And answering that for a 5 year old is a daunting task. We talked about Jonah and the calling God had on his life…the hard calling to go somewhere he didn’t want to go and do something he didn’t want to do. So he ran. We touched on the big fish part of the story but we ended talking about Jonah’s need to trust in God for protection, providence, and peace instead of simply running away.

And that seemed to make sense to Levi’s little heart. And it created some pretty big conviction in mine. Truth is, I have some pretty frequent big fish moments too. Moments when I want to run from the hard things God is asking me to do.

I pray that I can be used by God. But when that prayer is answered and the discomfort enters my selfishness sneaks in with it.

I don’t know what God is up to in my calling or in the life of my boys. But I also recognize that mourning over that lack of information keeps me self focused instead of trusting in Him. We can’t know the path of the wind. We can’t know how bones are formed in the womb. We can’t know the activity of God. But we can continue to glorify Him by our awe and reverence for the things He is doing…even when we don’t fully understand them.

This year they offered something different in the operating room for Levi, letting him choose the song that would be played as he drifted off to sleep. He chose “Christ Be Magnified”. If you are unfamiliar with the song, take a look at this chunk of lyrics:

Oh! Christ be magnified
Let His praise arise
Christ be magnified in me
Oh! Christ be magnified
From the altar of my life
Christ be magnified in me

I won’t bow to idols, I’ll stand strong and worship You
And if it puts me in the fire, I’ll rejoice ’cause You’re there too
I won’t be formed by feelings, I hold fast to what is true
If the cross brings transformation then I’ll be crucified with You
‘Cause death is just the doorway into resurrection life
And if I join You in Your suffering, then I’ll join You when You rise
And when You return in glory with all the angels and the saints
My heart will still be singing, my song will be the same

Oh boy, there is a lot in there that hits my heart this week. Specifically the part about now bowing to idols….expectations, self, and all the other things that we forget are actually idols in our lives that we worship, taking the place of God. And refusing to bow to those idols may mean we spend time in the furnace with Him by our side.

This is a giant brain dump from a very tired mom. I hope God can clean up my writing a bit and speak through it.

Please be in prayer for our family, particularly Levi and his pain management. He is truly struggling and keeps saying his “brain hurts”. Please pray peace over him as he heals. And please continue to pray for miracles in his airway.

Much love,

Leah