Looking back at the path we've walked, there’s much to reflect on, learn from, and even find peace in, despite challenges. My journey with a feeding tube began in July 2009, following my accident, and it has been a constant in my life since then. Though I cannot swallow and only God knows when I will, God has been faithful every step of the way. In this post, I want to share how my relationship with the feeding tube has evolved over time—from the initial challenges and adjustments to the lessons I’ve learned about resilience, patience, and faith.
"O give thanks unto the LORD; for he is good: for
his mercy endureth for ever." (Psalm 107:1)
The Beginning: My Introduction to the Feeding Tube
After my accident, the doctors concluded that I would not be
able to swallow. The decision to place a feeding tube was necessary for my
survival, though it introduced a completely new reality for me (and my family) to
navigate.
The placement of the feeding tube involved creating a direct
pathway into my stomach, secured with a small plastic flange (a disk-like piece
for support) inside my body. Attached to this was a 12-inch tube that hung
externally, which I learned to keep tucked into my bra strap to prevent it from
getting in the way. This feeding tube became my lifeline, literally!
At the time, I was also living with a trach, I was nonverbal as a result. I relied on an alphabet board, or reading lips to
communicate my needs. It was a challenging adjustment, as I had to figure out
not only how the feeding tube worked but also what my body could tolerate.
"But my God shall supply all your need according to
his riches in glory by Christ Jesus." (Philippians 4:19)
The only nutrition I received in the hospital was a
prescription tube-feeding formula called JEVITY. It was administered in
small amounts—just 8 ounces about three times a day—providing few overall calories.
My body had to slowly adjust to this new way of receiving nourishment.
However, from the beginning, I noticed my stomach did not
react well to JEVITY. Each feeding left me feeling nauseous and uncomfortable.
I tried to communicate this to the nurses and doctors, but it often felt like
my concerns were not being heard.
This period required tremendous patience. Though I was
grateful to receive nourishment, I longed for relief from the discomfort. It
wasn’t until I returned to (February 2010) North Carolina and met with my
outpatient speech therapist that things began to change. She recommended an
alternative formula called TWO-CAL, and for the first time, I felt hope
that my body would finally find peace with a new source of nutrition.
A Change for the Better: The Mickey Button
In addition to finding a new formula, I also sought to
replace my 12-inch dangling tube with something more adaptable. This led me to
the local hospital, where I learned the process for removing my feeding tube.
The nurse explained that the only way to remove it was to wrap the tube firmly
around her hand and pull the tube out of my stomach. With this knowledge, I
took a deep breath, prayed for courage, and told them to proceed.
Once the old tube was removed, they replaced it with a Mickey
button. Unlike the original setup, the Mickey button sits flush against the
skin (low profile) and allows me to attach and detach the feeding tube for my syringe. This
change was a game-changer, offering more comfort and convenience in my daily
life. I have been using the Mickey button ever since.
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| diagram of my initial tube with the flange & permanent extension |
Learning to Meet My Body’s Needs
As I continued with therapy and worked to get stronger, I
began to burn more calories and feel hungry more often. However, my stomach
could not handle large amounts of liquid at once. To compensate, I added
snacks to my routine, increasing my feedings to five times a day. My daily
schedule included breakfast, lunch, dinner, a mid-morning snack, and an
afternoon snack.
For these snacks, I relied on high-protein supplements like
Ensure, which I could easily find at grocery or drug stores. Adjusting to my
body’s calorie needs became an ongoing process, and I had to remain flexible
and open to trying new products that could boost my nutrition intake.
Over time, however, my body adapted. I was eventually able
to reduce my feedings back to four times a day: breakfast, lunch around noon, a
mid-afternoon snack at 3 p.m., and supper around 6 p.m. While this routine
worked for several years, I continued to explore different combinations of food
and supplements to meet my needs.
"And he said unto me, My grace is sufficient for
thee: for my strength is made perfect in weakness." (2 Corinthians
12:9)
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| diagram of Mickey (low profile) button |
A Shift to Real Food
In recent years, I transitioned from synthetic, man-made
formula meals to real food blends—a change I’ve shared in a previous blog post. (Adventure Awaits: the art of travel planning) This shift has been transformative for me. With these blends, I’ve been able to
return to eating just three meals a day: breakfast, lunch, and dinner.
At each meal, I consume approximately 32 ounces of liquid—the
maximum amount my stomach can handle at one time. While this is a significant
volume, my body has adjusted to it, and I now feel satisfied with three meals
daily. Lunch tends to be my largest meal calorie-wise, as I find I need more
energy during the middle of the day.
That said, there is a practical side to consuming so much
liquid at each meal. Frequent trips to the bathroom have become a natural part
of my routine! However, this is a small price to pay for the benefits I’ve
gained from the real food blends.
"Trust in the LORD with all thine heart; and lean
not unto thine own understanding. In all thy ways acknowledge him, and he shall
direct thy paths." (Proverbs 3:5-6)
Addressing Thirst
Over the years, I’ve often been asked if I feel thirsty,
particularly during the summer months. Interestingly, despite being unable to
drink liquids orally, I do feel sensations of thirst. However, I’ve only
experienced that extreme, dry, parched feeling about three times in the past 15
years.
When I feel thirsty, I take it as a sign that my body needs more water to avoid dehydration. I’ll increase my liquid intake accordingly. I’ve also tried using ice chips or swishing water in my mouth and spitting it out, ensuring I avoid accidental swallowing, which could lead to complications. If some water were to enter my lungs, it wouldn’t be too alarming since our bodies are mostly made of water.
When the Feeding Tube Comes Out, Unintentionally
Over the past 15 years, I’ve had three additional incidents
involving my feeding tube that I wanted to share. These moments are rare but
memorable, as they remind me of the importance of preparedness and
adaptability.
Another challenge I’ve encountered is when the feeding
tube unexpectedly comes out. The first time this happened, I was in Alabama
visiting my aunt and uncle, and it came out while I was in the shower. I wasn’t
hysterical, but I was pretty close—it had never happened before, and I didn’t
know what to expect.
Thankfully, I always carry a new Mickey kit when
traveling to prepare for emergencies. However, I knew I needed professional
help to replace it. At the local ER, the doctor attempted to place a new Mickey
button, but I don’t think he was familiar with the process. He used a metal rod
resembling a wire coat hanger, and I believe it punctured the surrounding area.
Within a day or two, the Mickey button came out again.
Fortunately, I was on my way home by then and could seek proper care to resolve
the issue. This experience taught me the importance of being prepared and also
highlighted the fact that not all hospitals keep the necessary equipment on
hand. I’ve even found that my local hospital has labeled supplies specifically
for me, which brings a bit of humor to an otherwise challenging situation.
One night, I woke up to find that my feeding tube had
come out and was lying in the bed. I didn’t know how long it had been out,
but I was immediately aware that the hole in my stomach could close quickly,
much like the hole from my tracheotomy that healed in just one day. We
rushed to the hospital, where I spent the majority of the day waiting for a
resolution. By this point, I hadn’t eaten since the previous evening’s supper
and was getting pretty hungry. Finally, they informed me that reinserting the
tube would require an x-ray and general anesthesia, which meant staying for
additional hours to recover after the procedure. Determined to avoid the
extended wait, I chose to stay awake and have the procedure done with only
lidocaine as a local anesthetic. While it was uncomfortable and I felt the
pressure as they stretched my skin to reinsert the button, I was able to leave
immediately afterward and finally eat lunch. It was a challenging day, but I
was glad to have avoided a longer hospital stay.
The third incident happened during a routine tube change.
I typically replace my feeding tube at least annually (more often as needed) with
the help of my cousin, who has enough medical knowledge to assist me. Normally,
the process takes no more than five minutes and is relatively uneventful.
However, during one particular attempt, the hole wouldn’t allow the new button
to go in fully, and we noticed a pool of blood. Not wanting to take any
chances, we headed to the radiology department where they successfully
reinserted the tube using x-ray guidance. Despite the initial hiccup, the
situation was resolved quickly and without further complications.
These are the only three notable incidents I’ve experienced
over the years, and thankfully, routine tube changes have remained
straightforward otherwise. Each experience has reinforced the importance of
staying calm, being prepared, and having trusted help when needed.
"Rejoicing in hope; patient in tribulation;
continuing instant in prayer." (Romans 12:12)
What Remains Unchanged
Even after all these years, swallowing remains elusive. My
upper esophageal sphincter refuses to relax, keeping me from safely taking food
or drink by mouth. Yet, through it all, I’ve adapted and integrated the feeding
tube seamlessly into my daily life. It’s no longer just a necessity—it’s a part
of me, one that God has used to sustain me for over 15 years.
"For we walk by faith, not by sight." (2
Corinthians 5:7)
Lessons Learned Along the Way
Looking back, I see how God has used this journey to teach
me patience, resilience, and faith. Each moment I’ve spent managing the
feeding tube has been an opportunity to lean on Him and trust in His plan.
As the Bible reminds us:
"But they that wait upon the LORD shall renew their
strength; they shall mount up with wings as eagles; they shall run, and not be
weary; and they shall walk, and not faint." (Isaiah 40:31)
Even during the toughest times—when my body rejected the
formula, or when I felt unheard—I learned that persistence and trust in God
could lead to breakthroughs. Eventually, I found solutions that worked, and
those moments reinforced my faith in His provision.
Closing Thoughts
This journey with my feeding tube has been transformative,
shaping me not only physically but also spiritually and emotionally. I hope
that by sharing this part of my story, you can see that even in life’s
challenges, God’s faithfulness shines through. Whether your own trials are
physical, emotional, or spiritual, I encourage you to seek Him and trust in His
plan.
"The LORD is my strength and my shield; my heart
trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with
my song will I praise him." (Psalm 28:7)
Stay tuned as I share more reflections and lessons from my
journey.
Does a particular challenge fill your mind? Please share.
Be encouraged. 🧡
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