I want to start this blog with a praise report! Malachi’s seizures have calmed back down to his normal and he is acting so much more like himself.
He has lots and lots of opinions these days and the medication increase does not seem to have affected his communication skills and quality of life. He is still staying up incredibly late due to a few nighttime seizures but they are his “old” type that we are used to- not those beastly ones we have been fighting recently.
Malachi just keeps growing and growing! He is so long legged now and trying to position him on my lap makes me laugh. Both boys head to the GI doc this week for weigh ins and g-tube checks and I am curious what the doctor will have to say about Malachi’s weight gain and height.
Levi is also growing by the day and starting to look like such a big boy.
He keeps us laughing and is at a phase where he gets us in trouble often with the things he repeats to others outside of our four walls. But he has the sweetest little heart for others. And a genuinely great sense of humor.
The boys did some kite flying with dad last week where there was zero wind, so Jake had to put in some extra effort. Here is a quick video for you to enjoy!
In one week Levi and I will be heading to Cincinnati for his pre-op appointments and surgery. I think I have mentioned this in previous posts, but since I can’t remember how thoroughly I explained it I will try again.
Levi has an extremely rare condition he was born with called Congenital (from birth) Idiopathic (unknown cause) Bilateral (both) Vocal Cord Paralysis. He is past the age that they will spontaneously “wake up” so this is a permanent, lifelong condition that will continue to require surgeries throughout his life. Until he turns 18 we will be doing annual trips to Cincinnati for surgeries and more often when needed.
The vocal cords produce sounds but they also serve other functions. They open wide to allow air to pass through when you breathe. They also close tightly when you swallow so food diverts to the right place and doesn’t end up in the lungs. Since Levi’s cords are paralyzed slightly open, and we opened them further with a piece of his rib cage, his do not always perform all these functions.
This is surgery #30ish? for Levi and each summer when we go to see his surgical team we sign off on “interventions as needed” before he goes into the operating room. Sometimes they need to trim tissue, sometimes they need to balloon dilate the airway, sometimes they just need to get a good look and test the fluid in his lungs to check for aspiration.
Usually leading into the surgery I can tell by his breathing what they may have to do, and we have been very blessed these last few years to require minimal interventions in the operating room. But in April Levi started struggling to breathe and had moments where he stopped breathing at night, called obstructive sleep apnea.
In addition to nighttime concerns Levi is also struggling to breathe when he plays hard or exerts physical activity. He starts breathing incredibly loud, called stridor, which indicates there are obstructions to his airway. It is actually pretty bad right now. It started getting worse in April but the surgeons weren’t able to work us in until now.
If we tried to open the airway more he would no longer be able to speak and he wouldn’t be safe to ever eat and drink. So we don’t want to intervene TOO much. But he has to be able to breathe safely, so something has to be done.
Next week we are going to do his typical MLB procedure (microlaryngoscopy & bronchoscopy) which will be done by his ENT surgeon and pulmonologist team. Then the ENT surgeon is going to remove his tonsils and adenoids (tonsillectomy and adenoidectomy or T&A) to see if we can make a little more room for him to pass air through his airway.
Because he is not a typical patient he will have to spend at least one night in the complex airway unit. Then his surgery team has asked us to stay local for at least 7 days post op in case of complications after discharge. With the pre-op appointments before surgery day we will be in Cincinnati for at least 10 days.
Unfortunately Jake is also scheduled to return to work the same timeframe so we are working out what is best for each child. It looks like right now Levi and I will do week #1 solo and Jake and Malachi will join us post-op, Jake heading back to Tennessee the following day solo.
Levi is a tiny little ball of nerves, swinging the emotional pendulum every hour of every day. He asks a lot of questions and cries often.
The truth is I am also struggling with my swinging emotions. But I am trying desperately to keep those stuffed deep down so he can’t sense my dread. Hospitalizations are never fun for ANY child. But for Levi the experience is known and memorized as it is repeated each year. He knows what is coming, and continues to ask me why I drop him off with strangers and leave (talking about the operating room hand off). The “silly juice” that most kids can take pre-surgery put him into respiratory distress a few years ago and he almost had to go on a ventilator. I am anxious about a repeat of that incident.
It is going to be a very hard 10 days for him, not to mention the physical pain that the T&A will bring. Malachi had his removed as a child too and I remember the misery of that well.
There is also an unknown of how any surgical change will change Levi’s abilities to speak, breathe, and eat/drink. He is functioning well with the position his cords are currently in. Will removing the tonsils cause him to aspirate liquids (go into his lungs instead of the stomach)? Will any of the surgical changes affect his voice quality or volume? Many kids with Levi’s condition cannot speak above a whisper and are not safe to eat and drink. I can’t imagine having to undo those things for a child that has grown accustomed to them.
If you can’t tell, there is an underlying anxiousness in this momma’s heart. And the logistics of planning, packing, and traveling with medically complex kids is complicated. We have to make sure we refill all prescriptions, both medical and equipment, so we can travel with enough feeding bags, formulas, etc to take care of each boy. These items aren’t something we can pick up somewhere else…they get shipped to the house. Then thinking through each worst case scenario- like should I pack oxygen tanks or a concentrator for Levi just in case? Or Malachi’s machines if he happens to get sick while we are gone? Just lots of thinking and planning involved.
In addition, this week we received a letter from the state trying to remove Malachi’s secondary insurance he has had since birth. With his Hypoxic Ischemic Encephalopathy diagnosis he qualified for state insurance regardless of our income and assets. They are no longer honoring that and if you own any cars, homes, or have any savings you are above the income limit, regardless of diagnosis. There is a waiver program I can apply for but we would no longer qualify for many of the grants we get for Malachi, like the grants we used to help get his therapy pool, specialized seating, etc.
Without the secondary insurance our family will not be able to function. Just one of Malachi’s medications costs $300 per month after primary pays their $500 portion. There are also many medical supplies that primary insurance won’t cover, like diapers, that secondary covers 100%. It is definitely an added mental stress to try to fight for a solution right now- and the deadline for their decision is August 20th.
I have been having some physical reactions to the stress that we are currently under and I get so wrapped up in that negative mindset. The sleep struggles we are having definitely contribute to my black clouds mentality. I recognize I am constantly making references to water, but sometimes it is the best way to describe the emotions in a relatable way so here we go…
This week I feel like I am at the edge of a raging river and in a few days I am going to have to make the conscious decision to pick up my son and jump in. I know I won’t be able to get my feet down to the river floor and slow down our float, so I have to be as prepared as possible and then hang on as tight as I can until we make it through these rough rapids. I know there is a calm part of the river up ahead where we will be able to swim to shore, but in order to get to it I just have to embrace the river and let it move us, as uncomfortable and miserable as the experience may be for me- and most importantly for Levi.
And then the mot important part aside from hanging onto my boy…trying to keep a smile on my face, reassuring Levi that I am not scared. Trying to distract him from the rapids by pointing out the trees and clouds.
It is in times like these that I struggle with fully leaning on the promises of God. Give me a pen and a piece of paper and I can write down scripture after scripture to encourage someone like me right now. But as I float this raging river I find myself struggling to find comfort in those verses. I have watched the Word of God come to life so many times, and I have seen His promises time and time again in our journey.
But right now it is hard to consider it all joy.
It is hard to think on the praiseworthy, the lovely, the excellent.
It is is hard to cast all my anxieties on Him.
It is hard to boast all the more gladly about my weaknesses.
It’s hard to walk through the valley of the shadow of death. And it is hard to fear no evil.
But as I tell Levi over and over again on surgery days, you can do hard things.
In Jeremiah 1 God is speaking to Jeremiah about the calling he has on his life as a prophet. Jeremiah makes excuses to God, claiming to be unqualified for the job he is being called to. I don’t know about you but that sounds awfully familiar to my ears right now.
God’s response to Jeremiah is a beautifully spoken one, reminding him that with that calling comes an equipping from the Lord (Jeremiah 1:7-10).
In verse 12 God has more to share with Jeremiah, saying: “You have seen well, for I am watching over My Word to perform it.”
I don’t have to try to make God’s Word come to life- the Spirit lives and breathes all on it’s own. I don’t have to manufacture joy in my hard moments- I have to lean on the Lord to overwhelm me with His joy and His peace. God in His omnipotence is able to perform His word in my life, and particularly in my trials, in magnificent ways.
Perform it. That is my prayer to God over the next two weeks, that He brings His Word to life for me in such loud ways. I pray that the God moments in the next two weeks overwhelm our family…not because we deserve them but because God loves to shower His presence over His children.
Jeremiah 1 ends with a powerful verse. God has asked Jeremiah to enter into a difficult situation as His mouthpiece. He ends the chapter telling him: “They will fight against you, but they will not overcome you, for I am with you to deliver you,” declares the Lord.
The fight exists. The hard exists. But God is with us and will deliver us from that raging river.
PLEASE join us in prayer from now until August 10th. Prayers for decision making, advocating, navigating, preparing, and trusting. Pray peace over Levi. Pray health over Malachi. And strength and wisdom over Jake and I.
I will try to do a brief blog update Sunday, August 6th with surgery updates (surgery day is August 3rd). Thank you for loving our family.
God bless,
Leah
