Obviously this week’s update is going to be a pretty lopsided one with a whole lot of info about Levi, but know that sweet Malachi has been such a love bug since we came home. He has been snuggling me each time I pick him up, and having him show so much extra love has been just what my momma heart needed after this past week.
Aside from this surgery week each year, Malachi and I are never really apart. Traveling away from him brings anxieties, but Jake did an excellent job!
Before the trip we snuck to the bowling lanes at Malachi’s request for a quick game since his special trip was postponed. We even rented him bowling shoes- the little things that used to not matter to him now matter a WHOLE LOT now that little brother is in the picture. And we are happy to oblige!
Levi asked to ”hold” Malachi one final time before we left and I snapped a few pictures from their sweet encounter .
Levi and I hit the road early on Tuesday and drove straight to his first pre-op appointment with pulmonology. The doctor was very pleased with Levi’s progress and said ”He is remarkable!” He also explained again that Levi’s diagnosis of bilateral vocal cord paralysis with unknown cause (idiopathic) is “very, very rare. I only have two patients with his diagnosis and he is one of them.”
On that note, I was doing some researching late one night this week and pulled up some studies on the things we have done so far for treatment with Levi. I was reading an abstract from a case study on the first experimental procedure he had done and BOOM I was able to spot Levi (nameless of course) from the study results. Reading these reminds me of blessed we were to be able to work with the surgeons in Cincinnati to find a solution. We are “the one”!
We spent our time in between appointments this week trying to find things to do with a very busy four year old that 1) aren’t germy environments and 2) not crowded places. That proved to be a hard task but we managed.
We are originally from Cincinnati and still have family all over the area, so we spent a lot of time visiting family and stayed with Jake’s parents for the week.
There are several Cincinnati restaurants we try to hit every time we travel north. Last year Levi was just learning how to eat and was still primarily g-tube dependent. While he is still dependent on it for 700 calories each night, he is eating all daytime meals by mouth. The difference between last year and this one is shocking!
We spent time with two of Levi’s great grandmas and one of them lives in a very large assisted living facility. She was so excited to show Levi off to her friends so we spent several hours there with her; as we headed down to meet them Levi asked ”Mommy, will grandma’s friends be dressed modest?” I told him I sure hoped so! His vocabulary these days is growing.
He also asked me at one point: ”Mom, is grandma really old? We need some new grandmas.”
All week long we dealt with some pretty big emotions about the looming surgery. When the petting zoo made him put on a paper bracelet it triggered some anxiety and behavior. We talked about surgery every day and night, going step by step through the process and what to expect. But he still continued to cry himself to sleep with anxiousness each night.
The night before surgery my heart ached when he said in such a contemplative way: ”Mom, I’m just a little bit different.” I wish their was a training on how to navigate these conversations with a medically complex child. I feel so ill equipped.
Levi’s check-in for surgery was Friday morning at 9:30. Little known fact about surgery scheduling- they often try to start with the youngest patients since you have to go NPO (no food or drinks) the night before. The older he gets the later that check in time will become.
He fought me but finally put on his surgery day shirt and we headed out.
Levi’s regular ENT surgeon was sick this week and Dr. Rutter was doing her surgeries for her. Rutter is the doctor that helped develop Levi’s experimental procedures and the one I talked to prior to his transport from Chattanooga. He was our first point of contact and gave us so much hope!
I remember vividly being in Levi’s NICU room and his surgeon coming in to tell us she thought we had officially exhausted all other options aside from the trach. She brought the consent forms in for his trach surgery, and after nearly 5 months I felt like I had lost our battle. I remember pulling out my pen, and at the last second asking her, ”I don’t mean to be offensive in any way at all, but would it be possible to talk to Rutter one more time?” She was so, so kind and brought Rutter in later that day. I looked him in the eye and said, ”I need you to tell me there is nothing else we can do for Levi except for the trach.”
And Rutter took a deep breath and said, ”Well. There is one more thing we can try.” And he proceeded to tell me about the rib graft surgery. It was a very complicated surgery that required four surgeons but he said he was willing to head it up, primarily because he knew the complexity of our lives with Malachi and wanted to find a way to make our world a bit easier.
We get to see him every now and then when we travel to Cincinnati, but I was so excited to get his report on Levi’s progress.
We brought some presents for Levi to open periodically throughout the pre-op wait, and it made the time fly by.
We had considered doing ”silly juice” this year to help him transition to the operating room a bit easier, but he has a history of it causing respiratory distress and I just couldn’t decide if it was worth the risk. When he was younger he was on 1/2 liter of oxygen and had reacted to a dose of Versed (silly juice) that required him to be put on 6 liters of oxygen and almost reintubated. He was handling the wait so well so I decided to pass on the silly juice…but definitely regret that one.
They let me walk him back to the operating room, Levi screaming the entire way. He has never handled this part well but has always been too confused to really process quickly. This year he knew what was coming and the hand off was an excruciating one. I passed him on to the surgery staff, complete strangers, then tried to leave the room as quickly as possible for Levi’s sake. But his eyes were burning through me, watching my every move. He was looking to me frantically for comfort and assurance and I had to walk away.
I am not exactly sure what the long term effects are from these repeated encounters with him, but I worry so much that I am creating a trauma in him that will cause long term problems in our relationship. He stayed very mad at me for about 24 hours after surgery, and I am absolutely sure it is due to the trust break we experienced on surgery day.
But back to the update…
Surgery went incredibly fast and did not require any cutting, stretching, or interventions. They lavaged his lungs and sent off cultures to make sure he isn’t aspirating his food and drink. And they checked his airway to make sure no tissue had overgrown and had potential to cause a loss of airflow.
The surgeons were both very pleased with what they saw. Here are some of the main takeaways from the surgery:
-Levi’s cords are still paralyzed. This is now considered a permanent, lifelong condition and that changes our long term plans a bit. He will be followed surgically on an annual basis until he stops growing (around the age of 18) to make sure no trimming is needed and he is still safe. If his stridor continues to worsen or he starts snoring that will be a pretty good indication that we need to take him back in for more interventions.
-Levi’s trachea is still floppy (called tracheomalacia) but still considered safe. His lungs look stronger than last year. And he didn’t visually see signs of aspiration.
-Levi’s voice quality is still a marvel. I asked if he would maintain his pitch and inflections and he said that he should until puberty hits. But he also said that some boys have better voice quality after puberty, so that is exciting to hear.
They brought me back to the recovery unit (PACU) early so I could do a quick g-tube change while he was still under anesthesia. He was still intubated at this point and being bagged (manually breathing for him) but I have seen these things dozens of times so it didn’t phase me too much. However, when Levi finally woke up he went from no movement to swinging and kicking, dislodging the bag from the tube in his mouth. It was a pretty dramatic 10 seconds as we tried to get the remaining pieces out of his mouth. He ended up kicking me in the eye socket pretty hard and punched the nurse.
Truthfully this was the fastest surgery I have ever done with the boys and we were back on the road after just 2.5 hours. We waited until the next day to return home so I could catch up on a few hours of sleep that evening. The anxiety of the week kept me up most nights and when the adrenaline wears off after the surgery I always crash pretty hard.
I have to be really honest with you and share that this week has been one of the most emotionally exhausting ones I have been through in awhile. The anxiety in Levi leading up to surgery was the worst it has ever been. The anxiety in me leading up to surgery was the worst it has ever been. It affected me in physical ways.
But the scene from the operating room continues to play when I close my eyes at night. His frantic eyes watching me, trying to process why I was leaving him in this scary situation with strangers. And why I was doing it with a fake smile plastered on my face and confident words but uncertainty dancing in my own eyes.
Later that night I pulled Levi close to me and asked him if we could talk about when mommy had to leave him. He immediately burst into tears, sobbing as I tried to process that moment with him and explain why I had to leave him. Explaining the benefits of a procedure to a four year old is simply not possible. So I explained how hard that moment was for me too, and how I didn’t really want to leave him there but I had to. He cried until he fell asleep and as I laid in that bed with him I felt my heart getting so incredibly frustrated with God.
Yes, we can do hard things. But why God? Why do we keep getting called to the hard things? Why do I keep getting called to the hard things? When will the hard things stop? I have lived a lifetime of hard things and I am so, so weary.
And in that moment God gave me the gift of His eyes. I saw myself in Levi surrounded by strangers in that operating room. Wondering why this person that I trust so much keeps placing me into scary situations and seemingly stepping away. Wondering why He is expressing so much confidence as He watches me from afar. Much like a four year old, I have a hard time seeing beyond the discomfort of the now.
But there is progress, healing, and wonderful reports that can come from those operating rooms. Those operating room moments in our lives are the very places that testimonies get written, grow legs, and come to life.
God carries us to the mountaintops and God carries us to the valleys. He is never apart from our journey. But do we really trust Him? Because if we trust Him we have to believe that He is doing something magnificent within us each time we are called to the hard.
I pulled up a blog entry from 2018 when Levi had his rib graft placed. We were still unsure whether it was a success, which as you know we later found out was successful at avoiding the trach.
As I read it again this week I was convicted in so many ways by the Spirit. I thought tonight instead of an original devotional thought I would instead share this one with you….
March 11, 2018- Buckets of Water
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.
Please continue to pray over our family as we process the disappointment that creeps in. We didn’t get our big miracle, but God has been so gracious to our family and given us so many other miracles along the way. Pray that we are able to cling to those moments as we try to press on past the disappointments. And pray for wisdom for me in dealing with parenting these amazing children. Being a mom is hard. Being a medical mom is a whole new level of hard. And this week I am feeling it in my bones.