Oh my what a week we have had!
Let’s start with the boring medical info. Monday night was the dreaded sleep study. I begrudgingly checked us in at 6:00pm and the wires were in place by 7:30.
I counted the wires alone and there were exactly 50 glued to his head, face, and body. He also had two bands on his torso and chest. Levi was not happy during the gluing and wrapping process.
This time around was different than his previous studies as we were trying to figure out what to turn his oxygen up to in order for him to sleep comfortably. He is safe at a lower flow but doesn’t stay in a deep sleep very long, so they wanted to try cranking him up. They started at 1/2 liter and the nurse did not turn him up throughout the night, which is a good sign.
That is the tricky thing about sleep studies- you have no idea if it is going well or not. All of the monitoring equipment is hidden from view except for the carbon dioxide output machine which was at a safe level all night. We will get results April 11 when we meet with his Chattanooga pulmonologist. From there we will schedule his next throat scope (called a microlaryngoscopy and bronchoscopy) in Cincinnati.
Levi slept pretty soundly; MUCH better than the last study. The test ends at 4:30am and they come in, wake you up, and take all the wires off. It is a rough way to wake up but boy was he happy when all of them were finally off. It took three long baths to get the glue out of his hair!
Malachi ended up staying sick through Monday but since Levi didn’t seem to be coming down with anything we kept his therapy appointment on Monday. Tuesday both boys had feeding therapy. Wednesday both had GI appointments and Malachi had horse therapy.
I officially changed my first g-tube alone, and hated every moment of it haha. Oddly enough I am easily grossed out by medical things. This life makes me suck it up and fight through it but some things still give me a heebie jeebies. Changing Malachi’s tummy tube was no exception.
With all the medical appointments out of the way for the week and Jake on spring break we attempted our first non-medical getaway! As you already know, traveling with the boys and their gear is very challenging. I went back and forth all week trying to decide whether it was worth the trouble but breaks like this don’t come often so I finally pulled the trigger and booked a condo in Pigeon Forge.
We have to have a full kitchen with a fridge and freezer to accommodate medications, formulas, ice packs for feeding bags, and a sink for washing/sanitizing. We prefer ground floor in case of emergency and handicap accessible is always a plus.
Levi requires a large tank of oxygen per night (3 feet tall) and 1.5 small tanks per day. He uses an IV pole at night for his feed bag, his feeding pump, and a pulse oximeter to monitor his breathing and heart rate at night. Between both boys we administer 9 medications each day, all requiring syringes that have to be washed after each use. Then there are the bottles, feeding pump bags, formulas for each boy, diapers, tapes, g-tube dressings, and back up EVERYTHING. We have to think of every worse case scenario and prep for it, as most medical things we use can’t be purchased at just any drug store.
This time around we brought a 25 foot cannula for the hotel room so we would be able to move more than 5 feet from the tank. We also took that to the pool so Levi could swim with his oxygen on (more on that in a minute).
After I booked the hotel we started talking to Malachi about our big adventure and he was wide eyed with excitement. When the time came for us to officially leave he was wild! The first stop was to a dinner show called the Hatfields and McCoys. We had told Malachi a little bit about the show but we didn’t know what to expect.
Malachi LOVED every second of that show. They shot guns, had people clogging (dancing with loud shoes), dynamite, and his favorite- dogs jumping into a pool. He doesn’t see well so I made sure to narrate every scene. His imagination was on fire and he acted out whatever he was hearing. At one point two characters were fighting and Malachi intently listened, swinging his little arms like he was in the fight too. Seeing his excitement was heart warming.
Levi screamed his head off in sheer terror for the first 30 minutes, wondering why we brought him to such a crazy place. Then after he settled down he watched the show intently.
The next day we grabbed some lunch and went back to the hotel for a swim.
Malachi was shaking with excitement as we prepped for the pool. Levi had never been in a pool before so we weren’t sure what to expect. Thankfully he loved it!
Malachi didn’t want to sit still for a picture and kept trying to swim away. This is his determined face. He loves the independence that swimming gives him and doesn’t want to stop for silly mom pictures.
Look at those semi-straight feet! Progress!
Someone asked this week about swimming and their g-tubes, which is a great question so I thought I would answer it here for anyone else who might be interested. Most of the rules for g-tubes are contingent on the stomas, which is a fancy name for the actual hole that the device goes into…kind of like a pierced ear. We have to keep this area dry and clean to prevent infection or skin breakdown. Right now both boys have beautiful stomas with no skin issues (praise the Lord!) so we felt a little more comfortable attempting a public pool, although we will not do this often.
Lakes, rivers, and other bacteria ridden places are a no-go but properly cared for public pools (no public hot tubs) are okay if the stoma is okay. We asked about how often the chlorine levels are checked and felt that this place worked hard to maintain their pool, giving us a little more peace of mind. The stomach is a non-sterile environment anyway full of bacteria so it is a little more acceptable than say a surgery site.
Speaking of germs, in my neurotic Leah way I took my rubber gloves and hospital grade wipes and spent a solid thirty minutes sanitizing the germs out of our rental! Always a must!
We headed back to the room for naps, then attempted a late night comedy show with juggling, dog tricks, and all sorts of other fun things. We made it to the intermission before Levi melted down so we headed back to the hotel for meds and bed.
This is Malachi’s “listening intently” face.
Levi did not like sleeping in a new environment and woke up in a panic several times a night. It was pretty pitiful to see the terror on his face.
Malachi takes weeks to recover from any respiratory illness as he doesn’t know how to cough and clear his throat. He wakes up coughing at least two or three times each night still and has to throw up to clear his throat. It is pitiful to see and upsets him every time. I am hoping this week he will be able to sleep more soundly.
We left his chair in the car one evening and had to improvise a bit, much to his amusement.
Saturday morning we packed up and headed out, stopping by the Jurassic Jungle Boat Ride on the way home. It is a 7 minute boat ride through a pitch dark cave with animated life-like dinosaurs that jump out at you. We knew that would be a grave mistake with Levi so mommy and Malachi went and I narrated the dinosaurs for him. Because it was dark he was able to see a bit better than normal, but just listening to them was a thrill for him. His favorite part was two t-rex dinos fighting and he will act it out for you if you ask him, roaring and swinging his arms like they did.
He still hates the sunlight and wouldn’t open his eyes for our picture.
Overall it was such a great trip for our family. Giving the boys “normal” experiences like these is something we need to try to do more often. Malachi was such a 6 year old, unabashedly excited about each new leg of our adventure. He giggled more in those few days then he does in a typical week, and that alone makes it worthwhile.
Levi is in a difficult stage (for us) and is extra whiny. He also wants to be mobile, butt-scooting all over the place, which isn’t feasible in public. He has to be within eyesight of me at all times or he will scream until he can’t breathe. We think he is cutting his molars so we are holding on to hope that this is just a phase. Don’t let the cute face fool you!
He has also been trying all kinds of new foods this week! We are so happy with the leaps and bounds he is making.
Anytime we leave our comfort zone we are reminded of how blessed we are to live in a small town where everyone knows our quirky family. When we are in new environments we tend to turn more heads, and this trip there was a whole lot of staring going on everywhere we went. I can handle most casual looks, but the hard-core staring that lasts longer than 3 minutes makes me so uncomfortable. There are curious eyes, kind eyes, judgy eyes, and disgusted eyes. I can tell you the type without even looking directly at them, and this trip was a mix of all of the types. I don’t know if that part will ever get any easier.
On to the devotional thought part of the post. I hope this doesn’t come off at all as arrogant, so please read with the right tone in mind…
Since Malachi’s birth six years ago, God has been doing something new in my life and I have watched in amazement as He has used me in a new and unique way. The Holy Spirit prompts me to write, and when He does I simply sit back and let God do the talking through me. I know that I sound like a crazy religious nut right now, and I don’t even know if I can accurately put into words how God writes through me, but I can tell you that when I read the words the next day I acknowledge that they are not my own. I literally do not recognize them. They are simply a message from God, using my story and platform to show glimpses of God’s heart to others.
I can go blog by blog with you and tell you which parts were written by Leah and which parts were written by God. He doesn’t take over every week, but when He does it is evident and purposeful. There is a distinct feeling that happens each time, and when it is finished I have such a sweet spirit overcome me. I always know there is an intended audience in mind and knowing that they will hear a word from the Lord brings me so much joy.
When Malachi’s Chick-Fil-A post went viral in 2017 that was a God post. He prompted and I ignored for two days. And through that one post we have been able to speak to millions about the value of life in the eyes of God.
I always wonder who the post is for…and the majority of the time I never get to find out…it really is none of my business. But this week as I looked back at an older post on Facebook, one that I know was written by God, I realized that it was exactly what I needed to hear. He prompted me that day to stop everything and write- I remember Jake getting annoyed because I tossed both kids at him and headed to the closet to type haha. The words pierced my soul as I read them, almost as if I was reading them for the first time. I thought I would share them with you again just in case someone out there needed to hear them again as well.
Earlier today I caught myself in a moment of mourning. As I prepared to give Levi a bath I flashed back to conversations with Jake when I was pregnant. We talked about how Levi would be the “easy” one. After Malachi’s rough start we were so thankful that God blessed us with a second son.
We talked about how different this child would be…how it would feel to take him home after just a few days in the hospital instead of the 4 months big brother took growing and healing before we got to bring him home.
We talked about how odd it would feel to have a healthy child that didn’t have to be at the doctor all the time. A child that wouldn’t have to go through the pain of surgery after surgery to try to fix brokenness.
We talked about how this child would get to witness the testimony of his medically complex brother and how it would shape him to be a caring and special man. We never dreamed that he would have a testimony all of his own before the age of 1.
Levi was supposed to be easy. He was supposed to be healthy. He was supposed to be “normal”. Instead, Levi has surpassed Malachi’s NICU stay and has blown past his surgery count.
And as I prepared his bath this morning and spent 20 minutes gathering his medical equipment- things he literally can’t live without- the pain of unmet expectations hit me hard.
This verse talks about the bread of adversity and the water of affliction. And as I read that line I heard my heart pleading “YES Lord. Why does our bread and water taste so different than everyone else’s? Why can’t we get the manna you send to others? Why do we have to be…well, different?” The pain of seeing my children suffer is something I can’t put into words.
But then comes the next line. The line that reminds me that God’s plan is greater than the dreams I had for normal.
“This is the way; walk in it.”
So simple. So direct. So eye-opening.
We aren’t supposed to have “expectations” for God, with the exception of expecting God to move in our lives. And oh boy, He sure does move in the Carroll family.
So as I look at this picture- this photo that represents my unmet expectations and my shattered dreams…again- I hear the voice of my God saying “This is the way; walk in it.” And I put my unique and complicated child into that tub and reminded myself that each time we take a step of faith and rely on God to get us through the next 60 seconds we bring glory to His name.
And I continue to believe that God’s dreams and plans for my children is so much greater than my pleas for normalcy.
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.”