Chapter Six: Jesus is My Source of Strength

“A greater joy is preceded by a greater suffering.” -Charles Spurgeon

We finally had our diagnosis. I wasn’t crazy. God had opened doors & showed us His ultimate provision.

But where did we go from here?

Treating SMAS is very tricky. The main way to resolve it is by gaining weight to rebuild the protective fat pad. First, doctors will encourage the patient to gain weight on their own. Usually, as was my case, this is impossible, because by the time of diagnosis the intestine is chiefly blocked. Even though I received my diagnosis within a couple months, I was extremely malnourished, had lost almost 20 pounds, & could barely eat 450 calories on a good day. I had also developed a fear of both eating & not eating. I knew not eating was unhealthy, but I also knew the terrifying consequences of eating involved critical pain, nausea, & throwing up. But I knew the alternative was an NJ feeding tube, & I was going to do everything in my power to prevent needing one.

In the days after my appointment, I tried Pediasure & set a goal of 1000 calories a day…but the Pediasure made me more nauseated then ever & I barely made a dent in the calorie count. I tried & I tried as hard as I could but it was seemingly hopeless. #frustrating

One particularly alarming morning I woke up worse than ever. I didn’t move a muscle. I didn’t speak to anyone. I didn’t watch Netflix. I didn’t drink liquids. I didn’t make facial expressions or attempt to communicate. I simply laid in my bed. It was like my body was incapable of functioning at all.

I grew increasingly lethargic throughout the hour, so shortly thereafter I was admitted to UVA to implement step two: a nasogastric feeding tube.

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My parents & I had already talked about the looming possibility of a NJ tube. Honestly everything about it caused a lot of anxiety for me. I knew it was anything but attractive. I knew it would be unpleasant. I knew it meant acknowledging I was really, truly sick. I knew it meant admitting personal defeat & weakness. I knew it meant losing control. & I simply wasn’t ready for that.

Even with everything I’ve been through, the feeding tube placement was probably the absolute worst experience I’ve had to endure. I was told it would be uncomfortable, but not painful. I was told it would be quick…ten minutes or less. I was told it would be simple. But it was not.

A NJ tube goes in the nose, down the throat & esophagus, through the stomach, & into the small intestine. The reason why feeding tubes work as opposed to food is because they have the unique ability to deliver nutrients to the body past the blockage.

They wheeled me into a scary looking procedure room filled with scary tools & unfamiliar people. I laid down on the table & braced myself for the worst while praying for the best. I was shaking & terrified & extremely relieved they’d allowed my Mom to be with me.

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The procedure itself was extremely painful. I wasn’t given numbing or put to sleep. I was completely awake & alert & aware of every single unpleasant feeling & abnormality. I felt the long wire go into my nose & down my throat. I felt their fingers roughly forcing it down into my body. I felt my stomach awaken & acknowledge something very wrong & very foreign was entering it & try to reject it frantically. I felt panic arise fast & strong as I began to choke on my own vomit. I heard Mom frantically urging the doctors to roll me over so I could breathe. I felt SO frustrated everytime I vomited because it meant prolonging the torture. I heard the doctors wondering why it wouldn’t go through the opening & I remember wanting to scream at them to hurry up & figure it out. I felt guilty for thinking that, too. I remember breathing hard & praying to lose consciousness. I felt Mom trying to find ways to bring me comfort…touching my hair or arm & whispering loving things. I remember thinking how hard it must be for her to watch this. I felt the thick tube slide over the wire & wondered when it would all be over.

The procedure ended up taking about 45 mins. I think it was the longest 45 mins of both Mom & I’s life. I was exhausted by the end & just wanted to go home. I wanted to go back in time to before I was sick & before everything was crashing all around me. I wanted it all to be over.

I wanted to give up.

But thankfully, I couldn’t give up. My body tried its very hardest to reject the tube. I couldn’t talk because the tube rested on my gag reflex. I was very dehydrated & in a lot of pain. My heart rate spiked frequently & randomly & I twitched a lot in my sleep. I was too busy fighting every second to survive…to make it through each minute. That alone was taking all my energy & effort & there was no time to give up.

When I look back on that week & the events surrounding it, I remember darkness, fear, & pain.

Yet God was still so faithful to equip me with strength & joy while providing for my needs.

-Because I was paralyzed by the knowledge of what was to come, I focused my energy on being Christ’s light to the doctors & nurses. I tried to have a heart of gratitude for the mundane. I thanked them for performing their medical tasks & always tried to greet them with a smile. It helped I was blessed with an incredible medical team & quickly bonded with my nurses. They told me constantly I was their favorite patient & that alone brightened my heart.

-After the tube placement, I realized there is no better way to learn the valuable lesson of humility than with an unattractive tube coming out of your nostril & tried to laugh about it as much as I could.

-Due to those spreading the word to pray for me, I ended up making some of my current closest friends from a simple, “nice to meet you, I’m praying for you,” text message.

-Another family friend put together a surprise card shower & brought me baskets of encouraging cards written by sweet friends.

-Even though my feeding tube was my most hated nemesis, my family saw a drastically positive difference after just the first feeding. Edgar (aka Edgrrrrrr ;-)) was truly my lifeline & a critical part of my healing journey. I couldn’t have done it without him!

But one memory definitely stands out above all.

Our first morning home from the hospital I woke up & instantly knew something was very wrong. My throat was closing rapidly & I was unable to talk or even breathe. I was immediately seized with panic & froze in fear. My Mom was just about to call 911 when suddenly God stepped in.

I instantly felt all the prayers storming heaven on my behalf fill me & an inexplicable peace engulfed me. My throat opened, my breathing regulated, & I was comforted by Jesus’s faithful reminder that He had never left me & never would. He was walking by my side & would equip me with exactly what I needed to not just survive…but thrive. I knew in that moment it didn’t matter if I was strong enough…because Jesus is my source of strength & He is always strong enough.

& thank the Lord for that!

To be continued.

 

4 thoughts on “Chapter Six: Jesus is My Source of Strength”

  1. You were so brave the day you got your feeding tube. I could see the fear in your eyes. My heart broke for you. But I was so grateful that the tube would keep you alive. Your spirit was strong even at your weakest. I love and admire you sweetie.

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