Each year when April rolls around I start allowing my brain to process our summer plans. Sometimes I can hear the dramatic dum-dum-dummmm ominous music playing as I start planning the medical trips, and this week the internal music was blaring.
We aim to do our medical travels in the summertime so that Jake can stay home with one child while I travel with the other. Having a “home base” is a security blanket for us, as prepping all the supplies for extended travel can get stressful. In about a month we will be heading to Orlando for Malachi’s Make-A-Wish trip and we are so excited about the opportunity to travel to a medically complex friendly and handicap accessible place! What a gift!
Vacations are not a luxury we can often financially afford and the MAW foundation is covering all expenses, including meal vouchers and gas money! In addition to a stay at the village in Orlando they have also booked us hotel rooms for the route there and the route back so we can split the drive into two days.
Levi heads to Cincinnati each summer for his annual throat scope, lung cleaning, and airway trimming (if needed). This is typically a week long adventure, with pre-ops early in the week and surgery day Friday. He has a team of different specialists that coordinate in the operating room so they can each do their role while he is under anesthesia. The hospital doesn’t open the surgery schedule for July until May 1st so we call in April to be added to the wait list for those surgery spots.
Over the last 6 weeks Levi has been struggling to breathe at night. I initially thought it was a cold then, when it persisted, assumed it was allergies. His oxygen saturations at night are safe, but he wakes himself up several times a night with his inability to take a full breath, known as obstructive sleep apnea. This isn’t a brand new issue for him, and it was one we struggled with tremendously when he was a baby and required him to wear oxygen at night. But for the last few years his airway has been open enough to pass air through without issue.
My mom radar has been flaring, but I kept really wanting it to just be simple seasonal allergies. His breathing started to get a tad more noisy during daytime as well, especially with physical activity. Last week I took a peek in his throat and sure enough his tonsils are obstructing his airway significantly. This has been on the conversation list with the surgeon over the last few operating room trips and has always been planned as our next course of action if his airway gets too crowded, and as you can see from the photo the gap for him to breathe through is not large enough.
For a typical airway, removing the tonsils and possibly his adenoids (called a T&A procedure) is a gnarly surgery but relatively simple if there aren’t bleeding issues post op. Malachi had this surgery done when he was younger and handled it decently. But for Levi things are a bit more complicated. Anytime we do something significant with his airway we open up the potential for breathing issues and eating issues. If we open things too much, the possibility for food and drinks to make it into his lungs increases. We also worry that voice quality will be affected anytime we do trimming and repair, as his vocal cords are obviously still paralyzed.
I called his surgery team in Cincinnati and sent photos of his airway and they said we definitely need to schedule a T&A alongside his throat scope/lung cleaning in July. The goal is to try to make it safely until then, but if his breathing gets any worse we will have to make a trip up sooner for surgery.
So now in addition to our week in Cincinnati for pre-ops and surgery, we will now be required to stay an additional 10 days for him to be monitored post op. They are expecting him to only need to stay a night or two on the complex airway floor and continue his post op care somewhere close to the hospital.
We won’t have dates until the surgery schedule opens up, but the extended stay in Cincinnati prompted me to slide all of Malachi’s summer appointment at Vanderbilt (with the orthopedic and spine surgeons) to October, aiming for Jake’s fall break. MAW trip is May/early June and we will be taking the teens to youth camp in mid June and I felt like pushing more traveling appointments into our summer would make me cry haha. We have loads of local appointments over the next two months also for both boys (epileptologist, GI, neurosurgery, pulmonology, and so many more).
So in summary…this is a new prayer request. That Levi stays safe enough at night for us to push off surgery until July. The extra work his nighttime breathing requires is burning more calories than normal and he is having a hard time maintaining his weight. We are increasing his tube feeds at night, but with him waking up and gagging so much with breathing troubles that hasn’t been a successful solution. Prayers are also needed for Levi’s emotional resiliency as he faces a pretty big surgery experience and pain. He has so much medical trauma and staying the night in the hospital sparks those embers that are always present.
We also need prayers for health. If Levi does get sick on top of his already tight airway we could be a very scary place.
On to more happy and entertaining updates…
Malachi got a much needed haircut. One of my dear friends offered to help and we tackled it together here at the house. The older he gets the more titles he is requiring me to add to my medical momma resume.
Levi got to go on his first ever field trip, and the excitement he generated leading up to it was so much fun to watch. He was literally jumping up and down with joy the morning of.
Levi started weekly sessions with an occupational therapist at school. Since he started school in January we have seen some great gains. This week we were working at home on his fine motor details, and I had him trying to draw different things, step by step, on his magnetic drawing board. Most of the time his drawings are just scribbles with no recognizable features, but he worked very hard on this one with each new command and at the end he successfully drew “a sad man”. I was so thrilled, and he was so proud! Go Levi!
Malachi is quite a character these days. He has been swimming like a fish and riding his horse at therapy like a cowboy. I treasure my one on one time with him when Levi is at school. We are connected in such a unique and beautiful way and have so many deep conversations. He can’t speak a coherent word, but he communicates so beautifully.
He is full of opinions, frustrations, and laughter. I took a video of him after a soccer game last week and his joy was so contagious. The team was chugging water from cooler and Malachi thought the spectacle was pretty fun.
His seizures have changed this week and become more aggressive and longer in length. This is usually a sign that something is bothering him or causing him pain so I am watching him closely as we try to eliminate potential causes. He has some teeth that are about to pop through the gums, but it could also be something less obviously like an ear infection or something else that needs to be addressed. This guessing game is one of the hardest challenges to navigate. We are praying for health over his body as well leading up to his MAW trip!
This week I have been been caught in a mental loop. I keep flashing back to the many times that God has led me to the hard and asked me to trust Him. I can look back and see so much growth in my faith and my relationship with Him through each of those trials, and I can look back with fondness at the hard knowing that it led to so much beauty and strength.
But it still brews up those bubbles in my stomach each time I think about facing the hard and having to take that step towards it.
Isaiah 43:1-3 “But now, thus says the Lord, your Creator, O Jacob, and He who formed you, O Israel, ‘Do not fear, for I have redeemed you; I have called you by name; you are mine! When you pass through the waters, I will be with you; And through the rivers they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, The Holy One of Israel, your Savior;’”
In this scripture the prophet Isaiah was speaking to the Israelites and trying to offer comfort and encouragement. He wasn’t promising them it would be an easy journey, but God promised to be there every step of the way.
They would have to pass through the waters.
They would have to swim through the rivers.
They would have to walk through the fire.
And as scary and terrifying as each of those encounters will be in our lives, God’s words in this scripture are like water to my parched soul…
Do not fear.
I have redeemed you.
I have called you by name.
You are mine.
I will be with you.
The rivers will not overflow you.
You will not be scorched, nor will the flame burn you.
For I am the Lord your God.
As we enter a season of rivers and fires I am choosing to focus on God’s promises instead of the unknown. I expect the waters to rise to my chin and swirl rapidly past me as I fight against the current. I expect to feel the heat of the flames as they threaten me. I expect to be overwhelmed with uncertainty.
But I also expect God to be true to His promises. And the reminder that my future, and the future and health of my children, is already established and written by God brings me a peace that surpasses all of my understanding.
Philippians 4:4-7 “Rejoice in the Lord walkways; again I will say rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”
Please be in prayer for our family as we enter the fun of these next few months as well as the hard.
One thought on “Rivers & Fires”
I am facing some trials also, but your post blessed and encouraged me. I worked with special needs children for 17 years in the school system in a suburb of Chicago. I loved what I did and I loved the children I worked with. Your children are truly a gift from God. May God bless you and your boys and see your through on this journey called life. ❤️☝️🙏