With so many surgeries this month we have been trying to spend a lot of time at home and not exposed to any potential sicknesses as we prepped for surgeries. The next open dates for surgery with Malachi’s hip surgeon is 7 months out, and Levi’s team in Cincinnati is typically at least 4 months out. One sickness could have knocked us out of our spots and started the countdown over again.

As we inched closer to Malachi’s Vanderbilt trip, Levi started with the big emotions. Levi came out of his bedroom the night before Malachi left for surgery asking “Mom, when you cut up those onions at dinner did you accidentally leave some in my bedroom?”

Me: “No buddy, why are you asking?”

Levi: “My eyes keep on crying on their own and I don’t know why.”

Malachi and I headed to Nashville late on Monday evening as we had to check in around 5am on Tuesday for his big hip surgery. He was excited to spend the night in a hotel with just mom, and we made it an adventure.

The original surgery plan was to go in and do one hip this round and come back to do the other hip in a few months. After they took him back to the operating room (OR) I headed to the surgery waiting area and settled in, expecting it to last around 4 hours. After an hour they paged me to come to the desk and I felt my stomach drop, as this is not a normal thing.

I checked in at the desk and they said “The surgeon needs to speak with you- we aren’t sure what it is about but can you please meet him in room 1.” My mind was trying to work through the potential reasons for him to leave the OR with Malachi and come speak with me, and I am sure you can imagine some of the darker paths that mental game took me down.

He came in and told me that Malachi was doing great, and he would like to do BOTH hips this round instead of just the one. He had studied our previous Vanderbilt stay and tried to figure out where they went wrong on his inflammation and pain post-op and he felt like he had formulated a plan that would help prevent a repeat of that same response. They increased his Vitamin C, Vitamin K, and increased steroids in the OR to prepare his body for the trauma it was about to go through.

Side note here- I am convinced that this orthopedic surgeon is one of the best in the world. He actually designed the surgery Malachi had done, driven by the desire to create better options for medically complex kids. The amount of effort he has put into Malachi’s feet, legs, and hips over the last several years is phenomenal and he treats Malachi with such dignity and respect. We all look forward to his appointments and surgeries as there is such a trust built there.

Malachi’s surgery ended up taking about 7 hours, in which they removed the heads of both of his femur bones and then attached/stitched the remaining bone into the hip joint permanently. They will never have the ability to dislocate again using this method. It will take about a month for his scar tissue to form, and he has a foam wedge to keep between his legs to help with the positioning and healing posture.

By removing the top of each bone he lost some length in his legs which naturally loosened up his leg tightness. But to help additionally with some specific tightness in his knees, he also did a quad muscle release to allow his knees to bend at 90 degrees. The other route would have been removing his kneecaps, and we were grateful he didn’t have to have that one as it just sounds cringey haha. Malachi’s legs currently feel like spaghetti noodles, with hyper mobility in all the joints. We expect this to stiffen up slightly but it is definitely taking some getting used to. In fact, he has a new “party trick” as the doctor called it, where his lower legs rotate all the way around- which ABSOLUTELY freaked me out (as well as the nursing staff). But that is a crazy story for another day.

Malachi went to the ICU after surgery and was bright eyed and feeling great. Then the meds started to wear off and his pain played the up and down game over the next several days. He is still in pain, but we are staying on top of it! He has done an EXCELLENT job communicating with his nurses and doctors using his switch and I have loved seeing his providers faces when they realize how cognitive he is.

It has also felt like a family reunion of sorts, as we were here for so long the last round. The amount of people that we recognize, and recognize us, is so fun for him. We also got to see several of the providers that he developed special bonds with, and he has enjoyed that very much.

Our stay was delightfully uneventful compared to the last stay at Vandy and we were able to come home on Saturday night.

Surgery days are so wild. It is hard to explain the many rules I make up for myself in my head….things I would have never imagined people think about, but now can’t imagine any other way. For example, fluid intake. On surgery days I try to drink a lot of water early on in the day and stop halfway through his surgery. That way I have enough time to get it all out of my system before I go back to PACU and can stay by his side at all times without needing to find a restroom. Sometimes we are in PACU for hours, and then the transfer to ICU can take some time. This round I did not have the luxury of having a bathroom or shower in our room, so I became very dehydrated, not wanting to leave his room to go down the hall to the shared toilet area. And going days without a shower, not wanting to leave the ICU to use the shared shower room.

I’ll stop rambling now…

The surgeon’s first words after surgery were “Malachi REALLY needed to have this surgery done.” He explained that the arthritis was visibility bad on both femurs, the right more than the left. I was confused as Malachi kept telling us that his left hurt worse than his right. The surgeon explained that the left femur bone was resting on his sciatic nerve and was definitely causing him significant pain. I am so thankful he was able to do them both and relieve him from all of the pain!

We have officially checked all the looming summer surgeries off the list and are looking forward to a carefree July. We will have an incredible amount of appointments over the next few weeks, including some return visits to Vandy, but no admissions or procedures are on the close horizon.

Total side-note here, but the amount of people that think this is an actual real snake on the wheelchair continues to amaze me. We actually had two audible screamers on surgery day when they saw it haha!

I let Malachi make his list for his hospital stay and he had lots of opinions. He wanted a particular essential oil diffused in his room, his aurora borealis nightlight projector, his Chick-fil-a blanket, and fun new socks. He also devoured some new audiobooks- signing “more” after each chapter.

Now that we are back home, I have taken a big, deep breath. Coming home is always exciting but also brings with it 100% of the caregiver responsibilities. When we are inpatient the nurses bear the brunt of the responsibility for pulling meds and making sure we stay on schedule. Right now Malachi is receiving 30 different medication doses each day and has other specific medical needs and routines that I have to keep track of, all while actively monitoring his heart rate and oxygen and addressing those changes when they come. The “tired” just changes to a different version of “tired” when we come home. But I am slowly returning to normal(ish).

While I sat in the surgery waiting area I started to re-read a book that the Lord had put on my heart called “The Red Sea Rules: The Same God Who Led You In Will Lead You Out”. In it there are a few quotes that really made my mind work.

“Worry is putting question marks where God has put periods.” -John R. Rice

Bishop Fulton J. Sheen called worry “a form of atheism, for it betrays a lack of faith and trust in God.”

As I read this chapter I stopped to evaluate my level of worry for this season of surgeries for the boys. I can list a lot of emotions that I struggle with, but over the last decade worry seems to get bumped further and further down on the list. We have watched God meet us in the lion’s den, wrap us up in His arms in the fiery furnace, and part the Red Sea for us to walk across.

But as worry has moved down the list, I have felt a spirit of apathy (spiritual indifference) replace it. Sometimes I look at the list of hard things we continue to get called towards and the zeal I once had for the opportunity for faith growth has faded. I still believe that God is good and my faith in Him has not wavered….but oh how I am weary of walking my children towards danger. And the isolation of this calling has felt exceptionally heavy lately.

While we were in the hospital this week I received a voicemail from another special needs mother whose son had been through a very similar surgery with the same surgeon. She shared that she had added us to her church’s prayer list and they had spent time that evening lifting our family up in prayer during Bible study. For some reason that voicemail really got the tears flowing. To hear that these strangers spent time in prayer over our family really touched me. They had watched their friend walk through the same journey we are now on, and they knew how heavy the load was. There was such a tone of sincere empathy rather than sympathy and it felt like a big hug from the Lord.

This week a memory on social media popped back up with something I had written several years ago. As I read it again, I was so surprised by how timely the message was, as my heart needed the faith reminders. So I thought tonight would be a good night to share that one again in case any of you needed to hear it as well.

————

In my life I have been called by Christ out of the boat many times. I have locked eyes with Him and boldly and faithfully stepped out of the boat to walk towards His embrace. In my early 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 storm we must enter.

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. I still get distracted by the waves as I watch them jump up and strike my children time and time again. And 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. And there is healing in the storm.

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 Peter’s.

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

Thank you for the support and encouragement many of you continue to send our way. The prayers were felt and this particular stay I felt surrounded by the peace of God, knowing we were exactly where we were supposed to be.

Sincerely thankful and blessed,

Leah

Last week little Levi and I packed up and headed north for his annual surgery at Cincinnati Children’s Hospital. Packing for just Levi and I always surprises me, as I have way less medical gear to think through than a typical family trip somewhere. I do have to remember unconventional things like his feeding tube bags, pump & charger, ice packs, extensions, formula, meds, syringes…but that is a drop in the bucket of what I have to remember for Malachi!

Right before I jumped in the truck to head out I grabbed a spare g-tube just in case we had any incidents. We are supposed to carry one with us at all times, and typically do as I have a spare for each boy in the van. In true Carroll fashion we made it to Florence, Kentucky and his g-tube randomly popped. We found a Kroger gas station, bought a bottle of water, and opened the new kit to pop a new g-tube in at the gas station and continue our journey. We can never do things the mild and boring way haha.

We stayed with my dad while in Cincinnati and Levi got to play with family leading up to surgery day. It was a great distraction for him, and grandpa made Levi an epic pre-surgery meal.

We were so excited when we got the call with an operating room (OR) time of 8:08am, arrival at 6:30am. Usually when he is one of the first cases of the day they aren’t behind schedule yet and things go quickly.

We woke up bright and early and checked in right on time. We spoke with all the necessary surgeons and 15 minutes prior to his OR time they administered “silly juice”, a medicine they can give to children to help calm them and give them a temporary amnesia for what is about to take place. Levi settled right into his silly meds and we waited to head down the hall.

Unfortunately the case before us in the OR had a very sudden emergency that kept them from leaving the room. As time ticked on Levi’s medication started to seem to wear off a bit and I was anxious that we had missed the window for reducing his anxiety. We went back to the OR about an hour later than expected and out to the surgery waiting area I went.

Both departments were able to meet with me together afterwards and discuss the results. We knew based on last year’s post-op report that there would likely be some trimming this year, but the needed trimmings are going to be a bit more advanced than what we had hoped, requiring an inpatient stay. As you may remember, we sign off on all interventions as needed that do not require an overnight stay and if they find more complicated things to fix we postpone for a later date to help with Levi’s anxiety.

Levi’s vocal cords are growing with him and still holding their open shape. But the area around his vocal cords is growing up and covering the airway and needs to be laser trimmed off. He has had several of these trimmings before and typically does well, but this round will need some significant trimming and it may permanently affect his voice quality and volume. We are going to try to wait another year to do this and have already booked the OR spot and stay for summer 2027. If his breathing worsens or becomes dangerous we will move that date up.

He has also been having some issues choking on his food, like it gets stuck in his throat and won’t easily go down. They thoroughly looked at his esophagus and found some bumps that are catching food, and lingual tonsils that need to be shaved off. Next summer we will be bringing in a GI doc to the operating room to see what they can fix with this issue.

Levi was very sore after surgery and have some trouble eating when the numbing medicine wore off. The anesthesia also stayed in his system an incredibly long time this year. But by the next day he was mostly back to himself.

With the help of some very sweet friends and family, we were able to snag a free ticket to visit the Ark Encounter in Kentucky on the way home. I wanted to do something special with Levi and create a memory, and we did just that!

He also got to pick out some souvenirs for Malachi in the gift shop- a job he did not take lightly. We were both very excited to make it back home late Friday night and have been catching up on all the family game nights since.

This was the best Levi has ever done on a surgery trip and I am so proud of how he is growing. We had some sweet conversations on the way there and back, and he at one point told me “You know mom, there have been three things in the last year that have really helped me grow closer to the Lord.” I asked him what they were and he said “Grandpa’s situation (various health issues), Malachi’s surgery last year, and my Great Grandma dying”. I asked him how those things helped him in his walk with God and he said “They make me think about God and heaven.”

Levi had a sore throat for a few days and ran a fever (the bodies immune response when they clean/sample his lungs). But he is back to his chatty, silly self.

Next week Malachi and I will head to Vanderbilt for his hip surgery. They will be removing his femoral head in his left hip and attaching the bone (the greater troch for all you medical nerds) into the “C” cup to create a hip joint. They are also going to do some tendon lengthening in his hamstrings as well as remove some pieces in his kneecap to help with comfort in that leg. They are only able to do this surgery one hip at a time due to the amount of inflammation response it creates in the body.

He will be in a significant amount of pain post-op, and we will be staying inpatient until his pain is managed and he is safe to come home. A typical situation is a 2 night stay, but he told us to expect at least a week and hope he bounces back faster than that timeline.

As much as it breaks my heart that he has to endure more pain and surgery, we are told that many verbal kids that have this done are so happy from the arthritic relief after surgery and have zero regrets. I hope that is the case for our sweet boy. Malachi has a good attitude about this one and we have already picked out some movies and books for us to tackle while we are there.

WHEW the mental triggers lately have been a battle. Three different surgeries in three different hospitals over the course of 1 month. Each of those hospitals hold a bundle of hard memories for our family, and a lot of hard conversations and decisions. I have been emotionally exhausted and am stuck in survival mode right now….not really enjoying life but instead focusing on getting through each 24 hours. I am hoping July brings some predictability and joy back into our days.

Last week was our 18th wedding anniversary, but with the chaos we are dealing with we decided to postpone celebrating until July!

It is in these harder seasons where I catch myself getting a little more apathetic in my walk with the Lord. I have a harder time forming prayers, as each surgery feels like the result of unanswered prayers. I trust that God’s hand is upon us, and he is the author for each of our lives but sometimes that next chapter isn’t written the way I want it to be and I get nervous to read it.

A few weeks ago I did a personal study on the different valleys in the Bible and the spiritual significance of each. I remembered reading a chapter about valleys/troughs in C.S. Lewis’ The Screwtape Letters so I grabbed a copy off the shelf and read it again. I had marked up this particular copy and spotted a chunk I had underlined the last time I read the book. This book is written from the perspective of demon, so when he talks about “He” it is a reference to God and the “creature” is us.

“Sooner or later He withdraws, if not in fact, at least from their conscious experience, all those supports and incentives. He leaves the creature to stand up on its own legs- to carry out from the will alone duties which have lost all relish. It is during such trough periods, much more than during the peak periods, that it is growing into the sort of creature He wants it to be. Hence the prayers offered in a state of dryness are those which please Him best….He wants them to learn to walk and must therefore take away His hand; and if only the will to walk is really there He is pleased even with their stumbles.”

This was an encouraging reminder to me, as this has become a season of bumbling and thumpy steps of faith. Our faith walk doesn’t always have to look crisp and polished to honor God. Worship can sometimes come through tears and honesty with the Lord.

Please pray for Malachi next week, and for prayers of peace over each of us as we all deal with a version of hard.

Sincerely,

Leah

Well, a whole lot has happened in the last two weeks.

Last week Malachi started sleeping more throughout the day and was clearly exhausted even though our schedule wasn’t very rigorous. He perked up a bit for horse therapy, board games, and soccer practices but then went right back to sleep.

At night he woke up two nights in a row with a tiny whimper of pain, which is definitely not normal for Malachi. When I repositioned him he went right back to sleep so we assumed it was hip pain from the side he was laying on.

My momma radar started flaring a bit more on Wednesday and we started going through our mental flow charts to eliminate causes for the change in mood and alertness. We hydrated extra in case the lethargy was due to dehydration. We did enemas to rule out constipation. We slept upright in chairs to keep pressure off his hips. He didn’t complain, but he was just still so tired and his heart rate started to slow way below his baseline.

On Wednesday evening Levi had his end of the year school play. I was hoping this would perk Malachi up, as he typically loves plays. And he wanted to get into it, but was very much distracted by something happening in his body. My stomach dropped, knowing that I needed to take him in.

We went outside after the play to take photos and I was very hesitant to take a family photo with Malachi not feeling like himself. I wouldn’t want someone documenting me in that state, but this little voice inside of me asked “Is this the last photo Levi will ever get with his brother?” I pushed the thought out quickly, scared a bit at how fast it popped in.

Thursday we decided it was time to head to the Emergency Room. I continued to second guess that decision, nearly turning around halfway to the hospital when Malachi woke up bright eyed in the back seat. But we continued, checked in, and went straight down for a CT. We know that Malachi’s shunt tubing has been disconnected for quite some time, so they started the investigation there. Within the hour they verified that Malachi’s ventricles were excessively full of cerebral spinal fluid (CSF) and he needed to have surgery immediately to relieve his intracranial pressure.

It was too late in the evening to get him into the operating room so the neurosurgeon on call decided to tap the shunt and drained an ounce of CSF from his ventricles to get him safely through the night. We went to the ICU for monitoring while we waited on surgery and settled in for the evening, with vitals being checked every hour.

As soon as the pressure in Malachi’s brain was relieved from the tap his heart rate started to normalize and his eyes were brighter. He went into surgery the next day (Friday) around lunchtime and got settled back into his room by dinner time.

The surgeon verified that the shunt unit itself was still working, Malachi has several feet of tubing that runs from the shunt down into his abdomen that needed to be replaced. They tried to remove the old tubing but it kept disintegrating each time they pulled so he made the decision to leave the old in and add a whole new distal catheter. Malachi has new incisions at the base of his skull, the middle of his neck, top of his chest, and two more on his abdomen.

He is healing really nicely and feeling/acting so much more like himself. We have been trying to even out his new haircut, which has been quite the adventure haha. Interestingly enough, this is the same week 13 years ago that he received his first shunt, and rocked the same hairdo! The white scars above his bandaid are from his original shunt surgery 13 years ago.

They discovered a little blood in his brain post-op which earned us an extra night in the ICU but the bleed self resolved and we were able to go home on Sunday evening. We will follow up with the neurosurgeon on Tuesday but clinically he is doing great!

When I made the decision to take Malachi in I started packing our bags. As you know, we pray for the best case, prepare for the expected case, and pack the car for the worst case. I was trying to hide the bags from Levi as long as possible but as soon as he saw my official “hospital” bag he started crying.

He is already dealing with some big emotions as we get closer to his surgery date, and this unexpected trip tipped his emotional cup over. Jake filled in the gap, taking his final day of work off to attend Levi’s morning awards ceremony and celebrate with him after while Malachi was in surgery. Trying to keep things as normal as possible amidst the chaos is such a balancing act.

Malachi and I had some special moments in the ICU together, finishing a few books, movies, and holding hands when he was scared. Our time together in hospitals is very special to us both…it truly is holy ground and we spend a lot of time singing praise songs to the Lord.

After surgery Malachi was a whole new person, eyes wide open for 3 straight days, just as content and as can be. We have slowly cycled back to a routine with him, and are still catching up on sleep.

On Wednesday we headed to Vanderbilt for his pre-op appointment with the hip surgeon. If I get into all of that this post will become a book so I will save that for the next blog post! But in summary, he is still planning to have his hip surgery on June 23rd and the surgeon expects him to spend some time in the ICU after, planning on being inpatient for about a week.

In other surgery news, Levi heads to Cincinnati for his surgery in 11 days. We have a packed schedule leading up to that trip, and we are hoping that the busyness of it all will help distract Levi from his anxious thoughts.

Levi’s stutter has continued to worsen and his tears flow freely these days. This morning we were a little slow getting into the sanctuary from Sunday School where he was anxiously waiting and he started sobbing, thinking we had left him. Right now he starts sobbing if he doesn’t know what room of the house I am in. It is heartbreaking working through these big emotions with him, as we are most definitely not qualified for that part of this journey.

“Glass Child Syndrome” is an informal psychological term used to describe the siblings of individuals with chronic illnesses or disabilities. The term highlights emotional invisibility- parents can get so consumed with the higher-needs sibling that it can feel like they look right through the other children in the home.

We are very aware of the potential of this with Levi, and try to come up with ways to help him feel seen. He and I planned a day together last week that was focused on just the two of us. And Malachi enjoyed the solo time with dad. But sometimes those grandiose gestures feel like band-aids on a gaping wound. I am going to try my best to make our trip to Cincinnati extra special for he and I.

In all honesty, I am still not fully recovered from this recent round. I feel depleted emotionally and physically. I think our pre-op trip to Vandy so quickly after our emergency was enough to push me into a funk and I am still working through dealing with jumping from one medical drama to the next one on the list.

I spent a lot of time in the Word this week, and the Lord pointed me towards so many needed scriptures that helped calm my heart. I don’t know how to explain it well, but Jake and I keep talking about the graciousness of God with this whole ordeal, putting the right people in the right places to help diagnose and resolve this matter before it became life threatening.

As Malachi was in the operating room I sat in his empty ICU room, staring at the empty space. These times while my boys are in the OR are my most vulnerable, and my brain can lock into God while my body still feels the reality that we are facing.

But this time around I felt a peace that can only come from God. These last few weeks I truly feel that God has been preparing my heart for what our family was about to encounter. It served as such a reminder to me that our “surprises” are still very much God’s plans.

Psalm 112 “Even in darkness light dawns for the upright…

I read this verse during his surgery and audibly let out a noise, realizing this truth is what I was witnessing. When I focus on God and trust in His plans for Malachi’s life I can always find the beam of His light in our darkness.

I have so many things I wanted to share with you tonight but this entry is getting a bit lengthy and my eyes are getting very heavy.

Prayer needs right now are for the many upcoming surgeries and appointments we have this month. We need prayers for health for our family so that everything can remain on schedule. And always continued wisdom and sensitivity to prompting from the Lord when emergencies like these arrive and need decisions to be made quickly.

Sincerely,

Leah

P.S. This has been our laugh for the week. Jake finished pressure washing the house and driveway this week JUST in time for a herd of neighbor cows got loose and came by for several visits…leaving their mark. The comedic timing was the laugh we needed.