Levi and I are back in Tennessee after an eventful week in Ohio! Let’s start with surgery updates…

I like to pretend that my life is normal, and it is weeks like this one that serve as a reality check. We successfully kept Levi from knowing that Friday was surgery day. I try to be very honest with Levi about his surgeries, although I don’t talk about it until we have to. He is a worrier and will stress for days leading up to the surgery.

Before procedures he has to go NPO, which means he can’t have food past a certain time (midnight this go around). Usually surgery mornings are escalated by him being hungry and sleepy which was definitely the case this trip.

We headed to the check in desk where I told the lady “Levi Carroll checking in for surgery” and as soon as he heard the word Levi began shouting “NO SURGERY NO SURGERY”. The anxiousness and tears began and although I could distract him for small chunks of time he kept returning back to the fear of what was about to happen. We had gone to the store the night before and picked out some special toys he wouldn’t be able to play with until “tomorrow” and that worked decently well.

There were no delays and they were ready to roll him through the check in process very efficiently. When his surgeon walked in Levi ran over and gave her a big hug, which surprised us both. But when the nurse came in with a Covid test, however, he lost his ever loving mind. He ran the gamut of emotions in the pre-op room and then the time came for him to go back to the operating room. Due to Covid precautions they haven’t been allowing parents to go to the OR to say goodbyes but for some reason they made an exception and let me carry him back. We got to the doors for the handoff- my absolute least favorite part- and he screamed as they pulled him from my arms.

I continually worry about the long term effects these repeated moments will have on our relationship. The trust is broken again and again, and the pain is induced again and again. Yes, it is what is best for him but sometimes I wonder about the damage it may be causing when he looks to me for comfort and I turn my back and leave the room.

Surgeries aren’t a one time deal with my children. They are repeated events that HAVE to happen. I was telling a friend this week how on surgery days I have to unplug the “mom” wire temporarily. I have to detach all of my emotions from the experience for two reasons: 1) using energy towards emotions depletes me 2) My boys will reflect my emotions- if I am calm they are calmer. So each time I unplug the wire and get the day over with as fast as possible.

These procedures typically don’t take very long and I almost feel bad for the other parents in the waiting area as I flutter in and out so quickly. I remember being in that very room being jealous of the other parents with shorter surgeries. I am a people watcher, but in that environment I keep my eyes down as much as possible as looking around makes me queasy.

Hospitals are a place of miracles but they are also a place of death. It is a place that you can have the best day of your life or the worst day of your life. It is a place that carries more darkness than light, no matter how hard they try to make the decor warm and inviting. The emotions in that surgery waiting room are thick and the tension can be felt in an indescribable way.

This time I tried closing my eyes to block off others but kept flashing back to an early Sunday morning when I sat in that giant room by myself. They don’t do surgeries on Sundays but this one was an emergency with Levi and I sat alone in an organize chair by the window. Instead of calling me into a parent conference room the surgeon just pulled a chair up next to me. The loneliness of those few hours in that orange chair is haunting.

Levi’s airway procedures breach two specialties so typically the pulmonologist comes in first to do the lung portion and the ENT surgeon comes in to do the airway repairs. When I get called to the parent conference rooms it is usually twice- one for each- then back to the waiting room until I am called to recovery. This time around I met with the pulmonologist for the update but the ENT surgeon was called into another surgery room so we ended up going on back to recovery. I had asked them to bring me back quickly before he woke up so I could change his g-tube while he was still coming out of anesthesia.

Levi woke up like a rabid raccoon as soon as I got his old g-tube out and started swinging. I was able to fill the balloon just in time before he sat up and started trying to hit the nurse and yanking on his IV. I bear hugged him so she could get the IV out, which obviously didn’t help his anger. He stayed mad until I told him we could put his clothing on and then he felt secure enough to calm down. We waited a bit longer so the ENT surgeon could come out for updates.

Here is a quick summary of the day:

-Levi’s vocal cords are both still paralyzed. If they are still paralyzed this time next year they will statistically never work in his lifetime.

-His airway is still wide enough for safe breathing but some tissue is starting to grow up around the airway which could become a problem before next year’s surgery. His adenoids, epiglottis, and arytenoids are all very large so it looks like we will be doing another supraglottoplasty in a year (if it can wait that long). These procedures involve trimming away some of the flesh and involves a hospital stay on the complex airway floor.

-Trach talk is officially off the table at this point. We are in a place where we have lots of surgical options to manage the airway.

-His lungs look stronger than last year. He has dropped the diagnoses of bronchomalacia and tracheomalacia! They have tested the fluid to check for signs of aspiration and we will hear those results in a week or so.

-Levi’s voice quality is the best it will ever be. Right now his cords are touching which gives him a stronger voice. If they get any closer he will not be able to breathe and we will have to surgically intervene. Ideally they would be slightly more open to keep air moving even when he is active.

-We are to watch him VERY closely, especially during physical activities to make sure he isn’t oxygen hungry. He has been having some trouble lately when he is playing hard outside and if that worsens to the point that we are having to limit activity we will have to make another trip up for the next surgical steps.

-I asked about how aggressively I should be pursuing oral feeds and they gave me the green light to really push foods but also cautioned that even if he didn’t need it that taking the g-tube out wasn’t a good idea at this point which the ways his airway could change.

Someone asked me if this was good news or bad news and I told them that it really depends on the mood I am in when I read them. I can find great things in this news, and I can also find devastating things in this news.

We still haven’t gotten our miracle that the cords start moving. That is continually my prayer. 27 times I have sat down with surgeons to have them shake their heads no. That creates some callouses in some pretty understandable ways. It also stretches my faith more than I am often comfortable with- but isn’t that really a good thing?

This week the emotions hit the hardest as I drove up to Ohio. I bottled it all in like I usually do, and as I drove down the interstate I just kept thinking how much I didn’t want to be doing this…this trip, this surgery, this life. I cried tears of anger that surgery trips fill our summer instead of the summer vacations other families get to enjoy. This life I have been called to is one I wouldn’t wish on an enemy and calls for me to give of things I don’t possess.

As the hot tears rolled down my face the Spirit put a word on my heart as He often does when I am choosing to listen.

“Purposed”

In Daniel 1 we are introduced to Daniel, a man taken captive to Babylon. He was in a life he didn’t choose (sounds familiar) and in an environment that didn’t make it easy to honor God. In fact, it actually made it easy for him to set his faith to the side and enjoy worldly things. But the backstory to this scripture really isn’t necessary here if you just focus on these words…

“But Daniel purposed in his heart that he would not defile himself…” (Daniel 1:8)

As I rolled the word around in my head I started remembering how faith is an incredibly difficult thing to commit to. It is something that is not meant to come naturally, something that you have to purpose in your heart to pursue.

Faith is a choice. And it is a choice we are called to make free from the chains of contingencies and circumstances.

We are to “purpose in our heart” and continually choose faith. As I made that dreaded drive to Ohio I spoke this scripture to God and affirmed that even in this dark moment I would choose to believe that God’s purpose in this pain is greater than my comfort.

I can just imagine the smile on the face of God when we purpose in our heart to continue to trust in Him when the Devil has so clearly tempted us with the way and emotions of this earth.

While we were in Ohio we spent some treasured time with family. Levi was so excited to see everyone and gave hundreds of hugs this visit. We spent some time with my sweet 89 year old grandmother; Levi sat on her lap and stared at her face for several minutes, then turned to me and said “Mama, grandma old.” I cringed and he took it that I didn’t understand, so he repeated it again and again “She old. Old Mama. She old.”

Oh the honesty of 3 year olds.

Levi also fell in love with Skyline Chili this trip. He is hooked and I am totally okay with that.

Spending one on one time with him was actual more special that I realized it would be. He is talking so much these days and our car time was full of conversations and goofy moments. We made up silly songs, talked about life, and smiled a lot. We shared slushees and went to playgrounds that I would usually feel guilty taking Malachi to as they aren’t very handicap accessible. It was a special time for us.

Every night before we would go to sleep Levi would say “Me go home”. When I asked him why he wanted to go home he would say “Malachi”. He definitely struggled with some home sickness and missed his brother dearly, and I did too. It was so hard being away from him. Jake handled the caregiver role like a champ and we did a lot of FaceTime and phone calls.

Their reunion last night was special and I have been squeezing Malachi every chance I can get.

Malachi woke up with a tummy ache this morning and we have battled it all day long, finally using emergency tummy meds to help him calm down. He had three medium seizures as we got him ready for church so I decided to stay home with him and send Levi and Jake on. We were able to get the seizures to stop but he is still in some pain.

I told Malachi that he will get to do his one on one trip with mom in a few weeks (Vanderbilt to see spinal and orthopedic surgeons) and he is thrilled! We have a slower week this week and will be trying our energy reserves refilled before we embark to youth camp next week.

Thank you for covering us in prayer this past week as we faced another challenging medical trip. We had so many blessing moments from friends that meant so much to us. It is in weeks like this one that I am reminded how important it is to have brothers and sisters in Christ willing to carry burdens with you. Just like Job, sometimes all I need is some friends to sit cross legged around the fire with me in my sadness and simply be a present and willing ear.

May God bless your family this week, and may you choose to purpose in your heart to continue to walk in faith.

Much love,

Leah