The theme of the week here has been flexibility. Tuesday afternoon we received a phone call that one of the two surgeons we planned to meet with at Vanderbilt on Tuesday had been called into several trauma surgeries and they needed to re-schedule our appointments. That trip will now take place late August.
I had spent most of the week talking this trip up with Malachi, so having to break the news to him was hard. He was disappointed, but we worked through those emotions focusing on the excitement of getting to do that trip in just a few short weeks.
But add onto that disappointment the frequent chatter of preparing for Levi’s week long trip to Cincinnati. Bad timing for an already disappointed 9 year old and a anxiety ridden 4 year old that requires LOTS of conversations about his upcoming trip.
Levi and I were originally planning to leave for Cincinnati today but have slid our timeline a bit to drive straight from Tennessee to the first pre-op visit on Tuesday. We will meet with the pulmonologist that will be in the operating room on Friday, and usually at this appointment they check for vocal cord movement. He has to be awake for this portion to truly test movement without anesthesia, and it involves sending a camera down his nose while I bear hug him tightly. It is a miserable appointment, but one that just has to be done.
The other surgeons involved have waived their pre-op appointments and plan to just meet with us right before the operating room on surgery day. Which is wonderful news as getting Levi back into the hopsital after his miserable camera experience is always a challenge.
Surgery day is Friday. We always sign off for ”interventions as needed” as they never know what will need to be trimmed (suppraglottoplasty), dilated (balloon dilation), or expanded until they are in there. His procedure is called a microlaryngoscopy and bronchoscopy (ML&B) and doesn’t take very long to do.
After the procedure is finished I get called into the conference room twice- one time to speak with the pulmonologist (lung doc) and the other to speak with the ENT surgeon. The lung doctor will examine his lungs and trachea, testing the fluid and cleaning his lungs to see if there is any sign of aspiration of food, drinks, or saliva. The ENT surgeon will be looking at the anatomy above the trachea, examining the vocal cords and seeing how open his airway is. Sometimes Levi’s epiglottis grows up over the airway and she will do some trimming as needed.
As I have mentioned before, if his vocal cords are still paralyzed at this time, statistically they will never wake up and regain function.
Alright, so how am I feeling leading into this appointment? The answer is complicated.
I would be SHOCKED if they told me his cords were functioning. So no big breakdown of emotions if they tell me they are paralyzed for life. When Levi was a newborn we pursued treatment as though his cords would never wake up, doing several experimental procedures to try to find a trach free route. Had we not gone that route we would be doing some pretty massive surgeries right now, aggressively trying to get the trach out.
I legitimately hate surgeries. I recognize the need, I recognize the blessing that they are…but I still hate them. I hate handing off my children. I hate seeing them under anesthesia. I hate the wait leading up to the operating room. I hate seeing the date and the word ”surgery” on my calendar.
Between both boys I think we are at 45 surgeries? Each surgery carries a host of memories, emotions, and anxieties that a momma can’t easily forget. I will prep for the day with my usual routine…
-Waterproof mascara for the surprise emotions. The ones that gets me EVERY time is the walk from the operating room to the waiting room. I am typically pushing an empty stroller or wheelchair and it just feels so unnatural. Levi is usually crying out for me and I have to turn my back and walk away. Ugh.
-Total random side note: I always try to shower and clean up for surgery days; in the past they have taken a bad turn and we end up in the ICU for several days where showers are rare. We now prepare for the worst, but I don’t anticipate any surprises like these. I also try to dress like an adult rather than comfy clothing because we have noticed it affects the way the staff (nurses, anesthesiologists, surgeon) talks to you. Call me crazy but I fully believe this makes a difference.
-A dark colored shirt in case there is post op bleeding from the boys. The chances of me getting stuck in that shirt for several days is there and hiding the blood spots helps me cope. I also try to wear something with a Bible verse on it to remind me that I am a representative of Him, even on my hard days. I try to think about the others in the waiting room, as each of us are facing our own hard battles in that room, and wear something that might spark their faith.
-A book that I will pretend to read when he is in surgery even though we all know I won’t be able to focus. Having something to stare at in that waiting room is a must. In smaller hospitals they let you wait in a private room, but in large ones like these you are in a room with at least 100 other parents. My people watching nature torments me as I absorb the anxiety and emotions swirling in that room.
-A notebook to take notes during the surgeon talks after and list of questions for the surgeons. It is always a burst of information and if I don’t write it I don’t remember it. Plus my mind immediately drifts to the thought that he is in recovery and the sooner I finish these meetings the sooner they may call me back to be with him. I tend to accidentally forget important questions I mean to ask.
-Freshly cut fingernails so I can’t self mutilate my cuticles when my anxiety kicks in. And a nasty tasting chapstick so I don’t pick at my lips while I wait anxiously for them to call me back.
-A bottle of water for after surgery. I typically dehydrate myself so I don’t require the restroom while I wait. I don’t ever want to be out of the room when they call my name. That is legitimately one of my nightmares, and is fueled by mistakes I made early on in Malachi’s surgery days.
-My hospital backpack. It is large enough to hold 2-3 days worth of hospital supplies in case of a surprise overnight stay. I also pack another bag for the car with emergency supplies if we get admitted.
I have prepped some surgery day surprises for Levi to help distract him a bit. I also have a ”surgery day” shirt for him this year to try to help him with the anticipation of the day. He has been anxiously asking all week long, so I have told him ”when I put this shirt on you, you will know that it is surgery day.” His shirt says: I can do hard things. Which is the phrase we repeat over and over leading up to the day.
We have also added a Bible verse into the mix when he starts to get anxious thinking about the day.
Joshua 1:9 ”Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
In the days in between pre-op appointments and surgery day we will be finding some fun things to do and visiting with family in the Cincinnati area. My goal is for the fun memories to outweigh the bad ones, although I am afraid I am in a losing battle with that one.
Jake and Malachi will be holding down the fort here in Tennessee, and I have been hugging him extra tightly. Malachi and I have such a unique bond and being away from him feels so unnatural. This is the only time all year that he and I are apart.
I have been spending a lot of time in the Word this week, trying desperately to prepare myself for the week to come. As many of you know, Daniel 3:18 has become a “life motto” of sorts, talking about how God is able to deliver us from the fiery furnace, but if He chooses not to then He is still good.
This week I spent some time reading through that chapter again and my eyes focused on a new chunk of verses. The more I have read them this week the more I have adopted them as my prayer for the week.
Daniel 3:26-27 ”…Then Shadrach, Meshach, and Abednego came out of the midst of the fire. The satraps, the prefects, the governors and the king’s high officials gathered around and saw in regard to these men that the fire had no effect on the bodies of these men nor was the hair of their head singed, nor were their trousers damaged, nor had the smell of fire even come upon them.”
Time and time again our family has faced this fiery furnace, and each time God calls us to walk back into the flames. I choose to keep believing fully that our call into the furnace isn’t always meant for us, but rather it is often for the outsiders looking into our lives. Like King Nebuchadnezzar in Daniel 3, from afar he was able to see the presence of God with the men in the fire, and I pray that the same is said by onlookers in our lives.
But these last few times I have entered that furnace I can’t help but look down and find all of the lasting marks, the smell of the smoke lingering in my nostrils and coming back to mind each time I think about re-entering the flames and filling me with a sense of dread.
I have slowly, and unknowingly, made the time in the furnace all about me instead of remembering that God is telling a greater story of deliverance.
My prayer this week is that I can keep my eyes focused on Him. I am praying that both Levi and I can walk out of the furnace this week with the ability to focus on God and His goodness rather than the marks and memories of the flames. That not even the smell of fire would come upon us.
Would you join us in that prayer?
Please also join us in praying for safe and uneventful travels, and for protection of Jake and Malachi in Tennessee.
Thank you for always giving me an ear to listen to my ramblings each week. We appreciate our community of support so much more than I can relay.
7 thoughts on “The Smell of Fire”
Praying for you guys this week!
Your ‘ramblings’ are much appreciated by many, as they continue to show how God is present and moving in your family. For most of us, there is no understanding of the turmoil, anxiety, grace, and blessings that having medically fragile children brings.
Your are such an encourager to my heart!!! My love and prayers are surely with you so often!!! I envy your strong faith! I am 75 today and wish I were even half the Christian you are, never forget how you help so many of us and I know God will richly bless you always! I love your boys so much from afar!!
Holding you up!!
Prayers for you all this week. So thankful for your posts as I see the presence of God in your lives and the testimony He lays on your heart to share with us as you glorify Him.
How did Levi’s surgery go yesterday. As promised, our Grace Group met Thursday evening and prayed for him. Praying for a miracle.
Thank you for your prayers Don!! Unfortunately Levi’s cords are still paralyzed, and this was the year that it would be categorized as a lifelong, permanent condition if they were still paralyzed at this surgery. It wasn’t a miracle we were hoping for, but God has been good and helped us make wise decisions throughout this process to set him up for an easier life. Thank you for following through with your promise, and for praying over him this week.