On Tuesday Levi and I will be loading up and heading north for his surgery on Friday. I have had many people ask me what he is having surgery on so I figured it would be good to summarize it on here. The short answer is: we won’t know what they will need to work on until they get in the operating room. We sign off on all procedures except for the trach and find out after surgery what was needed and performed.
Here is the long answer:
Levi was born with both vocal cords paralyzed in an almost closed position. The official diagnosis is bilateral vocal cord paralysis. The treatment for this is to put in a trach and wait until the child reaches 5 years old; 50% of kids with this diagnosis have vocal cords that wake up by then. If they don’t wake up by age 5 they will never wake up (aside from a miracle).
To summarize a very long journey, Levi was flown to Cincinnati at two weeks old to try several experimental procedures in an effort to avoid the trach. After several failed surgeries the surgeons agreed to try a very difficult and tricky surgery on him that they typically wait until they are older to try due to the size of the airway. It took several surgeons and several hours during which they opened up his airway and used a piece of his rib to prop open his vocal cords enough for him to breathe. Levi was the 2nd baby to ever have this done, and he was the smallest child to ever try this on. This procedure is called a single stage laryngotracheal reconstruction. I like to put the formal terms for things in the blog so if other parents are searching google they can stumble upon this possible treatment for their little ones as well.
Because there are no other previous examples to look at, we are completely in uncharted territory. The surgeons have been watching him closely to see if the new opening they created will continue to be “enough” for breathing or become “unsafe” for eating/drinking. To add to the intrigue, it seems that the gap is growing with him which can be a good thing (he would be able to breathe easily) or a bad thing (he wouldn’t be able to safely eat or drink and may lose his ability to speak). There are definitely pros and cons to all sides.
Right now Levi seems to be in a stable spot. He is breathing well, but when he exerts energy he starts to wheeze. This tells us clinically that his cords are still paralyzed but they will verify that this week. They will also clean out his lungs and tell us if they find any food particles. This would be a game changer as we would have to cut back on what he eats and drinks by mouth.
This week’s procedure is called a microlaryngoscopy and bronchoscopy and involves ENT surgeons and pulmonologist. I am relatively confident this is procedure #27 for him and at least 20 of those have been these same ML&Bs. In addition to his vocal cord issues he has some other areas of his airway and lungs that are floppy (called tracheomalacia and bronchomalacia). I have my list of questions for the surgeons and hope to find out some helpful information that will help us know how to proceed. For example, we have been working hard on getting Levi to eat by mouth, but there is always a chance that if we find food particles in his lungs we will have to cut back on that. I am continually hesitating on getting him to master new foods when I know there is a chance they can be taken away. That would be hard for any three year old.
Last year the doctors were thrilled at his progress and safety, which was very encouraging to us. We are hoping for another positive report but the potential for bad news is still lingering.
I have to be really honest, this week has been very challenging for me mentally. I keep thinking back to the early days of Levi’s story and some of the really hard times are sneaking back to the front of my memory. We experienced more failures than successes and the roller coaster of emotions took it’s toll on my heart. It is in weeks like this one that I recognize the PTSD and the trauma of what we went through during those months.
I flashed back to a conversation I had with a doctor near the end of Levi’s stay. There was a constant battle between the ENT surgeons and the NICU doctors over Levi’s safety without a trach. The NICU staff felt strongly that he HAD to be trached and tried frequently to justify doing so (against mom and surgeons orders). The surgeons kept clinging to slivers of hope and possible surgical solutions and I obviously jumped on that bandwagon.
One afternoon I spoke with a NICU doctor who was VERY agitated that I would not sign off on the trach. She looked at me with such anger in her eyes and said “If you try to take this baby home you won’t even make it to Kentucky before he stops breathing. You will be on the side of the highway performing CPR on him and he will die because of YOU. His death will be on your hands.” She then went to her office and typed up a paper that said I understood that if my child dies due to not having the trach that I acknowledge that it was a preventable death and 100% my fault. She asked me to sign the paper in a very bully-like manner and I responded by telling her that I wanted to speak with his surgeons again. If they said the trach was the only option then we would gladly sign off on it (the stance we always had), but if there was any other route to take we wanted to exhaust that first. She stormed out of the room with a trail of residents behind her. I am still appalled that parents are threatened and treated in such shocking ways when we are all supposed to be on the same team, finding the best treatment plan for each individual child.
The mental drama from that stay goes so much deeper than I have ever shared with you. We were at war for our son on a daily and sometimes hourly basis. Going back into that building is still traumatic for me, not to mention the agony Levi feels when he realizes he is going to have surgery again. We keep it a secret from him until he realizes it on his own.
So leading into this week I travel between the emotions of excitement to hear good news, fear of hearing bad news, dread on Levi’s behalf for the pre/post op moments, and a strong desire to get it over with. I don’t particularly enjoy talking about it with others. And I have several physical places in that building I have to avoid looking at when I travel through the hallways as they bring back a host of hard memories. The chair I was leaning on when I got a phone call that he coded…the slow elevator I had to ride to get to his bedside as they fought to keep him alive the night we arrived….those surgery conference rooms that I experienced so much disappointment in. The building is full of reminders and I often feel a cloud rise above my head when I walk through its doors.
Let me take just a quick minute and catch you up on the rest of life. Levi found a stack of pictures in a drawer from my baby shower for Malachi and took each one to him to show it to him and tell him who was in the photo. They are such sweet brothers.
Malachi is having a great, seizure controlled week. Seizure “control’ to us is him having less than 6 a day and no large ones. It brings my peace knowing he is doing so well right before I head to go out of town.
Leaving Malachi is such a hard thing for me. We literally sleep nose to nose so I can wake up when he seizes, so being away from him is always an adjustment. Jake is a heavy sleeper and I always fear that he will sleep through any emergencies with Malachi, so I have to give that over to God and remember that He has already set Malachi’s timeline here on earth.
Levi and I will be staying with family while we are in Ohio. Traveling with just one of the kids is always mind blowing to me, as it is astronomically easier to have just one set of needs to focus on. Traveling with Levi changes the car we can drive, the activities we can do, even my restroom breaks on the drive. When I am traveling solo with Malachi I restrict my liquids so I don’t have to leave him unattended in the car for bathroom breaks. As odd as it sounds since we are traveling for a surgery, time with Levi gives me a glimpse of “normal”.
Speaking of glimpses of normal, a friend invited me to a David Crowder concert this week and it sounded like a good opportunity to refuel a bit before our big week. I snuck away on Saturday and drove to the most amazing concert venue I have ever seen! It is called “The Caverns” and pre-Covid the concerts were held inside of this cave. Not they do the music portion outside of the cave to allow for social distancing, but the restrooms are still inside so I got a glimpse.
My friend and I had a wonderful time singing praise and worship and just doing something out of the ordinary!
This week I taught from Matthew 14 in my youth Bible study, particularly the part about Peter’s failed attempt to walk on water. I heard that story as a child but it wasn’t until recently that I saw my moments of weak faith looking eerily similar to Peter’s.
And I am embarrassed to admit this, but I find myself longing to stay in the safety of the boat.
In my life I have been called by Christ out of the boat many times. I have locked eyes with Christ and boldly and faithfully stepped out of the boat to walk towards His embrace. For years I welcomed these moments seeing them as an honor as I knew they strengthened my reliance on God.
But things changed dramatically when my precious children were added into the equation. Now I find myself getting sick to my stomach each time Christ looks at me from the middle of a raging sea and says “Come”. Each surgery decision, each new procedure, each new diagnosis is a raging sea moment that I don’t have the opportunity to ignore. It is a sea I must enter, holding tightly to my boys and masking my fear so as not to worry them.
I cling tightly to my sweet boys as I step with shaky legs into the tumultuous waves and try desperately to remind myself that He is faithful. That He is the calm in the storm, and I need only to rely on His power to keep me on top of the water. Yes, I still get distracted by the waves as I watch them jump up and strike my children time and time again. Like Peter many times I get overwhelmed by the storms and start to sink, shouting for God to rescue us.
Staying in the boat and holding my children safely in my arms seems like such a safer option…but my faith in that situation is placed in the boat itself…not in my God.
We each have a choice. We can choose a weak faith that stays in the comfortable parts of life, never being challenged and pruned, but never experiencing true growth. Or we can choose to leave the comfortable moments and search for faith challenging ones knowing that the fruit that we can produce after a pruning can be magnificent.
Faith was never meant to be easy. Sometimes as parents we are called to charge head on into the messy parts of life as uncomfortable as those parts may be. And while these moments may challenge our already weak faith in inexplicable ways, it is in these raging sea moments that our children see our faith come to life. I want my kids to see me as a willing water walker. I hope I can cast away my spirit of fear and trade it for a boldness like Peters.
This week is a walking on water week. As much as I desire to stay safely tucked in the boat I see the beauty and power of being called into the storm, as that calling leads me closer into the embrace of Christ.
I have learned to kiss the wave that throws me against he rock of ages. – Charles Spurgeon
Please pray for Levi this week as we go back to the operating room. Pray for traveling mercies, wisdom, and good reports. Please also pray for Jake and Malachi as hey navigate life at home together. 24/7 care for Malachi without brief moments of rest is difficult mentally. He brain and body defies logic, and pairing that with lack of sleep is very hard on the caregiver. Pray that Jake is able to build an extra dose of endurance and patience this week!
I am believing that I will have a good report to share with you next week!