We are safely back in Tennessee and trying to unravel from our tightly strung week in Cincinnati. We missed the pace that our rural Tennessee world provides. This week I couldn’t help but notice the high end people and polished areas that Ohio had to offer…and in the meantime my Tennessee friends were asking on Facebook if anyone had found their pot bellied pig “Piggles” who escaped from the house that morning (yes, pigs are inside pets here). Other friends were offering to bring their hounds to sniff the pig out. I missed the craziness and simplicity of this place.
Speaking of craziness, the bear has not been up to the house this week, although he has been hanging out in the woods next to the house and frequenting the road. As long as he stays away from the front door we are content!
Ahh I am avoiding starting the Cincinnati update. But I guess I just need to tackle it.
We went to Cincinnati with high hopes that this would be our final trip. Back in early May Levi had a throat scope in Chattanooga and the pulmonologist excitedly announced that Levi’s cords were moving completely normally! Jake and I were ecstatic with the news! This was the miracle we had been praying for. We started taking the steps needed to get him off his g-tube and he successfully passed a swallow study. I fully expected the Cincinnati doctors to share in our joy and do a happy dance with us as they discharged Levi from their caseload.
On Monday morning we met with pulmonology who seemed very pleased with Levi’s progress. He said it was unlikely he would even lavage (test the fluid in Levi’s lungs for food particles to see if he is aspirating) since clinically he looked so good. The appointment went great. He did notice some stridor on some videos we had filmed.
On Wednesday we met with the ENT surgeon who has been tackling Levi’s complicated case with us from the first hour we flew in to Cincinnati. We really love her. She asked if we could send a camera down in the office right then and there to see the vocal cord movement; that movement is best seen when they have zero anesthesia or sedation in their system, and even easier to spot when they are agitated. A nurse and I locked Levi in a bear hold as she sent the camera down his nose. He was obviously screaming and we could all hear a bit of his stridor (squeaky breathing/gasping for air).
She pulled the camera out and said disappointingly “I’m not seeing any movement at all. They are still both fully paralyzed.”
Jake had left the room as he can’t handle seeing those torturous bedside scopes, so I was rolling her words around in my mind trying to figure out what in the world was going on. She said that many doctors who don’t see many cases of bilateral vocal cord paralysis can often mistake arytenoid movement for vocal cord movement.
Levi’s trip to the operating room the next morning verified that his cords are still paralyzed. At this point his airway is a decent size, which is why he is breathing so well without oxygen but as he grows that gap will likely not grow with him; the gap is created by a piece of his rib in the back of the cords which will obviously not grow over time. If that happens we will have to do more surgeries to open it wider and wider, each time risking his ability to speak and/or eat or drink by mouth.
We went from envisioning a life with a little normalcy for Levi back to a life of more surgeries, restrictions, and question marks.
I am currently running the gamut of emotions. This weekend I have felt defeated and angry. And to be honest, I am allowing myself to dwell in those emotions right now.
Before we heard the disappointing news, we were driving down I-75 and we approached the city landscape of Cincinnati. I was thinking about the exciting conversations we were about to have with doctors. I suddenly realized that I hadn’t thanked God for our miracle in awhile so I prayed with such an intense gratitude. I thought to myself “Thank you God, we finally won one! We finally had a prayer answered with good news instead of heartbreak!”
And as I have mentioned hundreds of times before to you, unmet expectations and disappointment are two of my biggest stumbling blocks in life. They bring about a deep, dark anger in me that I have to fight hard to get rid of.
Logistically speaking, Levi’s diagnosis and future remains unchanged from the path we were following in April. But since his “great news” in May we had started planning a different life for Levi. Starting back on the old plan again is hard for me to do.
Levi is safe now with his oxygen levels but we will still need to watch him closely for changes and intervene when needed. In fact, after surgery we loaded everyone into the car to head to Tennessee and Levi’s oxygen saturation was too low so we had to go back on oxygen… a visible reminder of our defeat.
There is also a hidden sting that happens when we get bad news in appointments. Everywhere we go people ask “How did it go in Cincinnati?” and I have to verbalize the bad news over and over and over again.
The surgeons also mentioned that Levi has something called tracheomalacia (floppy trachea) and bronchomalacia (sticky lungs). They are very concerned that any respiratory sickness will put him in the ICU. They reminded us of the importance of keeping him as healthy as possible.
We will also be looking at removing his tonsils and adenoids in the near future to help open his airway a bit more. We signed off on the surgeon to put tubes in his ears if they were needed, since he is having so many recurring ear infections but the ears looked great so we are waiting.
Alright, pity party monologue over for now.
Time for some Malachi pictures too- they are harder to come by as we are often holding or supporting him and don’t have a free hand for a photo. I have some big Malachi thoughts these days, but I will save those for another entry.
We did get to do some fun things in Cincinnati in between appointments. The boys both really enjoyed the zoo, although Levi dwindled quickly from the heat.
One of Malachi’s favorite things to do when we go to the zoo is pick out a souvenir afterwards. He had been pretty intrigued with concept of the rhinos, so I found a stuffed one in the gift shop and asked him if he would like for that to be his toy. He signed YES and I told him we would look around and make sure there wasn’t something he liked better. We found a giant lizard with spikes down its back so I added that into the options. “Do you want the rhino?” NO “Do you want the lizard?” YES YES! I absolutely love how opinionated he is.
The gift shop questioning continued and finally he settled on an alligator that made growling noises. And he was one happy boy!
Both of the boys thoroughly enjoyed playing with family throughout the week. We were the audience for lots of plays and make believe and they always made sure to include Malachi.
My little sister has a claw machine so we used the opportunity (and key) for this photo op.
I also got to meet up with another Chattanooga mom two of our hospital days who is on a similar airway journey with her son. I was able to share a few things I wish I had known when we were transferred to Cincinnati. It is always refreshing to talk to other people who understand your lingo.
Since we have been home the boys have been getting reacquainted with all of their toys.
Ignore the unpacking mess in the background of all of our pictures! And the blue painters tape holding the air vents down…toddler life!
Here is a silly video of Levi singing karaoke:
And Levi apparently learned how to open cabinet doors while we were gone. Yay?
I saw a photo this week that struck my heart…
I saw myself in that mom, bloodied from all the attacks the devil has made on our family. I have a deep desire to preserve normalcy for each of my children, and I just feel like I am failing. Some of those darts are still getting past me.
This morning I did not want to go to church. I wanted to be in the presence of God and physically AT church but I didn’t want to barrage of questions I knew would be waiting on us. I didn’t want to speak the results because then they are more real.
As I was getting ready for church I put on a new necklace with a pendant that says “It is well with my soul”. As I looked in the mirror at myself I could see weary eyes holding back tears. I saw a defeated face looking back at me, and when my eye caught the words of that necklace I thought “It is NOT well with my soul. My soul is hurting, desperate to take away the trials these boys each face and unable to do so.”
I thought long and hard about whether I should take off the necklace since those words weren’t true for me. But I brushed the thought away, deciding that if I declared it maybe I could create the wellness in my dehydrated soul.
Then 5 minutes later the necklace literally broke off my neck. The chain itself broke in two. As it hit the floor I gasped, not quite sure whether to take the random moment as a God thing. But I feel in my heart that anything that happens can become a God thing if you look hard enough.
And here is the conclusion I came to: transparency and vulnerability is important to God.
He doesn’t want our forced grins and forced happy thoughts. He wants us in our weakness so that He can make us strong. It is the moments that our souls are unwell that give us an opportunity to cling to God and His goodness, desperate for a refreshing.
Tonight I looked up the words to the song “It is Well with My Soul”, written by Horatio Spafford in the late 1800s. The song was written after Horatio lost four of his daughters in a shipwreck in the Atlantic Ocean. He was on a ship several weeks later, passing the spot where the accident happened and the Holy Spirit laid these words on his heart.
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.
It is well with my soul,
It is well, it is well with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ hath regarded my helpless estate,
And hath shed His own blood for my soul.
My sin—oh, the bliss of this glorious thought!—
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.
But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!
And Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
There is so much beauty in this song, and when I read it even before knowing the history, I could hear the hurt in the authors words. But I also hear the hope he has in Christ.
I would be foolish to think that I am the only one this evening that has an unwell and hurting soul. We all have things that take away our peace. But my prayer is that, like the song says, God will whisper His peace to my soul.
I pray that God helps me process my disappointment and aching heart this week enough to sing the words “It is well with my soul”.
Thank you for continuing to pray for miracles for both of my boys.