Today I want to cut right to our surgery updates while they are fresh on my mind.
In order to do so, here are a few big background pieces you need to know:
-Levi was born with bilateral vocal cord paralysis, which means both vocal cords are paralyzed partially open. In his case they were paralyzed very close together and he wasn’t able to breathe when he was born.
-The current treatment for this condition is to put in a trach and hope that the cords start moving by the age of five, a 50% chance. This was the only option presented to us at birth, and I was devastated.
-We found a few hospitals across the nation that were trying experimental surgeries (had done 4 total surgeries at one and 19 at another) for Levi’s condition and two were willing and eager to try some things on Levi to avoid the trach. After much prayer we transferred him via air ambulance to Cincinnati.
-Much to our disappointment, Levi failed the first experimental surgery…then the second…then the third. After 4 months of trying surgery after surgery I had my pen ready to sign off on the trach. I asked to speak to the head surgeon one final time and he came up to Levi’s NICU room. I remember asking him “I need you to verbally tell me there is NOTHING else we can try.” I will never forget the look on his face when he said “Well, there is one more thing we can attempt but it is a very difficult surgery involving four surgeons. We have only done it on one other baby and he was much larger than Levi, but I am willing to try it.”
-Within the week Levi had a single stage laryngotracheal reconstruction where they placed a piece of his rib in his airway to help prop it open. It was successful and we were able to avoid the trach! One of the biggest fears the surgeons have had is that the airway wouldn’t continue to grow with him and in a few years our solution would not be enough and the trach would still be needed.
-From a parent standpoint we really took a gamble in assuming that Levi’s cords would not wake up by age 5 and treated this as a lifelong condition that needed a permanent solution rather than a temporary one. Levi is nearly three, so as of now we guessed correctly. His cords are still fully paralyzed.
We are on an annual checkup basis with the team in Cincinnati, and this was the week. Jake and I were both confident that his vocal cords had not awakened; we can still hear some squeaking when he is active and when he is sleeping which tells us they are pretty close together. But most of the time when we take him for these appointments there is some sort of trimming or stretching that needs to happen in the operating room. We sign off on all the possible interventions and wait and see what they end up doing.
We met with his surgeons leading up to surgery day and they were all very encouraged by the clinical signs they were seeing with Levi (what you can see/hear when you are around him and what his oxygen numbers are doing when awake).
When I met with them post-op they shared with me that he looks GREAT from an airway perspective. He has some floppiness in his trachea (tracheomalacia) and lungs (bronchomalacia) that looks stronger than last year. But the biggest news is that his airway IS growing proportionately with him! That was one of the biggest fears and unknowns that would lead us back to a trach conversation. His airway is naturally widening beautifully.
I asked if it looked like he would lose the ability to speak based on how wide it is getting and they said at this rate that we can expect him to continue to have a voice. I also asked if this would increase his chances for aspiration since the opening is wider leading to his lungs and they said that it looks like Levi is learning how to direct food and liquids down the right path for now.
We talked about Levi’s airway for several minutes, and their excitement was noticeably contagious. We have dealt with a lot of surgeons over the years, and I have never been able to see legitimate excitement on the faces of the people in the room. She shared with me how they had talked about Levi in the operating room and how severe his case was at birth. She turned to me and said “Levi has really defied the odds that WE even had for him. We were talking about how bad his condition was 2.5 years ago, and even we didn’t think we would send him home without a trach. But to see this work for him so beautifully has given us so much encouragement and hope.” She then explained that because of his success, they are starting to do this surgery on more and more babies with this condition to avoid the trach. I left that small conference room fully believing that they were as happy as I was with the day’s report.
Since this was and is still an experimental case we will continue to be followed likely for Levi’s lifetime. It doesn’t mean that the issue is “checked off the list” and we could be facing more minor interventions in the future on his airway but it seems we have crossed the threshold into “safe” enough to not even mention the trach anymore. The surgeons aren’t quite sure yet how much physical activity his condition will allow, but those things are minor and nothing to fret over right now. As of now, we will continue to go back each year for another look to make sure things are continuing to progress.
As far as the trip itself, traveling went well and I stayed awake by listening to some old movies on the portable DVD player. Sound of Music, Seven Brides for Seven Brothers, Cool Hand Luke. I kept a stash of toys in the passengers seat and tossed one to Levi every time he started to fuss.
We stayed with my dad who lives about 45 minutes north of the hospital. Levi had so much fun playing with my younger siblings and visiting with family. But sleeping in a new place really threw him for a loop and he stayed up most of the night prior to surgery.
The morning of surgery was a rough one with a Covid test for Levi. He was VERY VERY upset by the intrusion and still talks about the whole incident. The test came back negative and we waiting for another hour or so before surgery time.
Levi’s main surgeon came in and asked the same question she asks every time we see her: “Have you gotten a swimming pool yet?” And this year I beamed and shared with her that YES we have. In a very tearful medical conference with Levi’s team two years ago I shared with them my vision that both boys would be able to swim together one day. Trached children are at a huge risk when swimming or bathing and swimming is literally the only thing that Malachi can do independently. I remember mourning over those brotherly moments for them as we were close to losing that dream.
My family bought Levi a baby doll this week and it proved to be a lifesaver for him. He was so distracted by taking care of the baby that he didn’t get too restless. And the nurses were able to do each of the necessary steps to the baby doll before doing it on Levi, which helped him.
I had talked to Levi about what was going to happen when it was time to go to the operating room, so when they came in to get him he clung to me tightly and started crying. They had to pry him off and take him out screaming, which was so hard for my mommy heart. But I had to pretend for his sake that it was a completely normal thing to do and that I wasn’t worried.
It took them 5 pokes to get an IV this time around, and he had already awakened by the time I was called back to the recovery room. I never need directions to Levi in the recovery area, I just follow the squeaking! Once he got back into my arms he calmed pretty quickly and did not require any post-op oxygen. Shockingly after not sleeping the night before, he didn’t rest again until 9:30 that night. That is opposite of how he usually is, and this momma was too worn out to consider making the drive back to Tennessee that same day.
Surgery days are a whole myriad of emotions for me. There is the constant nagging of worry and fear, but I have to stifle those emotions and put on a brave face for the kids. They need to feel my confidence. My appetite disappears for days leading up to surgery and I have a hard time sleeping. The combo of it all is so physically and mentally taxing, and when it ends it is such a rush of so much relief.
This sounds a little crazy, but even Jake and I don’t talk much on surgery days. We are usually separated for them, as he cares for whichever child is not having surgery. I have a hard time talking about the things that are happening, and he has a hard time hearing them. So I text him when he is being taken back and again when I am done talking with the surgeons, but other than that we shut down for several hours on surgery days. It is best for both of us! Jake’s personality commits to the “ignorance is bliss” mantra…honestly you all know more about the actual day than he does haha!
I save my breakdown for when that first moment of solitude when we arrive home after a surgery trip. Jake takes both boys and I spend time crying in the shower and letting all the built up emotions go. Yesterday as I let the water fall over me I found myself crying out to God, “I’m so tired of fighting. How much longer do I have to keep fighting?”
Okay, now back to surgery day.
As I sat in that waiting room all of the memories flooded back to the many times I stared at those same windows and walls. I thought about the many emotions I had experienced in this same room…anxiousness, excitement, fear…but this time I just felt indifferent to the situation. And then I hated that I had become so calloused and indifferent to surgeries. I never imagined a life where major things would feel so minor. I was obviously worried about how Levi was handling things, but knew he was in good hands.
But then my mind wandered towards what could have been. I started to allow my imagination to process what this day would have looked like had we put a trach in Levi at birth. His cords haven’t started working yet, so we would still be in this same seat, staring at these same walls, but I would have been wracked with hope that THIS would be the time his vocal cords would be seen moving. Hope that THIS would be the day we got our miracle.
And while we haven’t gotten our miracle, God has led our family to the next best thing, and taken us on a healing journey. So maybe we did get our miracle? Who exactly decides which things are truly miraculous? Maybe our definition of miracle and God’s don’t match up the way we think.
As I sat in that chair I could visually see a tense, worried version of myself sitting there…a momma who was about to hear news that her son’s trach wasn’t ready to come out yet. That he would live at least another year with limitations, home healthcare, and disappointments. My heart felt her pain.
And then as I looked in the reflection of myself in the window I realized how truly blessed I am by God to be sitting in the waiting room expecting to hear that nothing has changed…and that report being good news.
Perspectives are astounding things. They can literally revolutionize a situation and breathe life back into it.
2 Corinthians 4: 16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an external glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
This week I got a glimpse of the “renewing” that the verse talks about. It is a process that sometimes we don’t get to witness, but nevertheless God renews us day by day.
Today I am thankful for the things that remain unseen. I am thankful that God’s plan for my family is so beautifully unseen.
And I pray that I can continue to find contentment living in the unseen. Without the glimpses of unseen moments that sneak into our lives, we don’t get the chance to really appreciate the seen.
I never imagined I would emerge from a hard surgery week singing the praises of our God so loudly. Yet here we are.
Thank you for your prayers this week, and all the many ways you lift up our family behind the scenes.