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Love/Hate Relationship. Living with a Feeding Tube.

Black and white photo of kimberly with feeding tube
Well hello Feederick Tublee (aka feeding tube).

Like a vacuum, I now come with attachments.

As cranial nerves 6-12 are affected by my brain tumor, there was a chance of complications. The first milestone was waking up from the surgery. As most neurosurgeons considered my tumor inoperable, due to it's location and complexity of the nerves that were inside of it. There was a risk I wouldn't survive the operation. I owe my life to the team of medical professionals that worked on my 16 hour surgery.

Upon waking up from a medical induced coma three days after the craniotomy, I had a room full of medical professionals working with me to find the extent of nerve damage. One test after another trying to understand what functions I may have lost during the procedure.

Before we met.

The first thing that came to realization was that I couldn’t speak. As I tried to answer questions, it was just air. A whisper. I had motioned for a pen and paper so I could write down what I was trying to say. That’s when we discovered I had double vision and couldn‘t see to write clearly. I looked at my husband in panic as I realized, I couldn't communicate. It was a very scary. Relying on hand gestures and Robert (my husband) to interpret what I was trying to say. I gestured. I CAN'T BREATHE. It was a very stilling moment, I was trying to stay calm but my mind was racing with fear. I was physically taking in air, but I had to consciously think about every breath I made. As I took a deep breath, I had to be careful not to breathe to hard as I would choke. Why was I choking? What was going on? That's when we realized, I had lost the ability to swallow. The events over the next few days, weeks and months tested every amount of control and will power I had. Accepting your body in it's new normal is tough in the beginning, but the first few moments and days of discovery can be a testament to the true power of our will.

Meeting for the first time.

I went 9 days without eating and getting the nutrition needed to maintain strength. While I had fluids through an IV, I wasn’t taking in nutrients. I lost over 30lbs, weighing nearly 90lbs at my lowest. I felt my body get weaker as I went from sitting up in bed to barely having the strength to lift my hand. You might be asking why didn't the hospital team feed me? There is a reason for that. When you wake from a craniotomy, there is chance of nerve damage. The extent of that damage is unknown. Nerves may start working right away and sometimes they take longer, up to a year or more. For some, the nerves never heal. As nerve recovery is different for each human, its a unique wait and see for each individual. It's better to see if your nerves start to function on their own, than immediately start medical procedures that may not be necessary. The goal for me at that time was to wait and see if my body would start to swallow and eat unassisted. In my case, things didn't wake up within a few days. I was still struggling to breathe and not choke. To this day, I cannot believe how much saliva our bodies produce. Every second, constant spit, breathe, spit, breathe, over and over again. It was tough, sleeping isn't easy in a hospital anyway as they come in often to test, but not swallowing didn't help the situation. You never know the pain and tolerance you can handle until you are put in a situation where you have no choice. During this time, I was both frustrated with my body and impressed with its endurance. I kept saying I could do anything for three minutes. Then another three minutes. When your body is weak, it's time for your mind to be strong. It can be a powerhouse when you need it. I kept it simple. Get through the next three minutes. I gave myself so many pep talks to not give up.

When time had passed for me to swallow on my own, the next step was a feeding tube in my nose. However, there was a complication putting a feeding tube through my nasal cavity. This led to a series of tortuous events over several days. I won't go into detail about this, other than it was the hardest thing I've ever experienced, physically and mentally. It was also the first time I lost my grace and got upset and verbalized it, in a not so sweet way. My husband brought cookies for the staff as it was rough for everyone. Eventually they were able to get a tube through my nose. Giving the nutrition needed to regain my strength. That nasal tube worked for a couple days until it broke. I won't go into detail about that ordeal either, other than I hope to never go through it again and will forever dislike anything being put in my nose. Let's just say at this point, I was so ready to have a feeding tube put in my stomach. I was begging for it. After 12 days in intensive care, I got my wish. A peg tube was placed in my stomach. This is where the love/hate relationship begins. I knew I needed to have one to get the nutrition my body needed to heal, but I didn't want it. Let's just say, it wasn't love at first sight.

"When your body is weak, it's time for your mind to be strong."

Getting to know one another.

Over the next 10 weeks, I would learn how to balance breathing in air while not choking on my saliva. Yes, this was still an issue I was working with in addition to not being able to walk very well, double vision and other things. For anyone that has gone or is going through it. You just manage it the best you can. It’s amazing what you notice about your body. Things you take for granted that all the sudden seem like an exhausting task. I couldn’t swallow anything. This also made it difficult to sleep or get rest. I was tired, I needed to rest, but I got what rest I could, so you learn to accept it. I was not excited about having a feeding tube either. As a matter of fact, I was terrified of it. Worried how it would change my life and my daily activities. At this part of the relationship with Feederick Tublee (my feeding tube) I wasn't sure we would stick together for long. Ready to get rid of it as soon as I could. I was so focused on how soon I could have it removed it quickly moved up my list of priorities. I didn't like the floppy tubes and being attached to gravity fed feeding bag three to four times a day wasn't delightful. I had to clean the site on my stomach constantly and it was uncomfortable, painful at times.

My family and friends would ask if it was Ok to eat in front of me. It absolutely was! I encouraged it, the smell of foods and the sound of utensils hitting a plate was the closest thing to me eating. I would smell the smells and remember what it was like to taste them. Never again would I turn down a dessert or food. While I couldn't eat, I still had cravings. For this I would suggest to my family to order a hamburger, Thai or Mexican food as those were the things I dreamt about eating.

Finding the right liquid formula was another story. The first few upset my stomach. I would wake up at night (and still do) with the worst stomach pains. I can feel my stomach trying to move the tube as it twists and turns throughout the night. Eventually we found one that worked from Kate Farms - a plant based formula. We also had a smaller mic-key tube pictured above put in after 8 weeks of having the peg tube. This device was more comfortable and I didn't feel like I had floppy tubes everywhere. I still was adamant about getting mic-key tube removed too. My goal was to be able to swallow on my own and to be able to ingest enough calories to get it taken out. Ten weeks after my surgery I got my first sign. I was able to swallow a tiny bit and over the next month was able to swallow tea, coffee and soup. This was such a HUGE milestone. I still had double vision and other complications after surgery, but the ability to swallow, even a tiny bit, was so incredible.

Friends with benefits.

Growing a bond.

Five months after my surgery, I've had enough nerve recovery where I can speak well enough for others to understand me as well as eat almost anything. I've been able to maintain a healthy weight and can get through the day without having to rely on the feeding tube too much. I've come to form a bond with this device. It's no longer something I'm afraid of. It doesn't get in the way or disrupt my life as I was so fearful it would. It's really not that big of deal anymore. We have become friends. It's fair to say we have found a way to work together. As I still am waiting for my nerves to fully recover I've come to realize. I only have so many "swallows" in a day before my throat stops wanting to play along. So I choose, I can either eat solid food or drink water. I choose to use my "swallows" on all the delicious things I can eat and use my tube to help get my water intake. What would you do? Eat or drink water? I think we can all agree - eat. So like a gas station I fill up three or more times a day. I can get my water intake pretty easy now. I can finally admit this tube is awesome. Yes, I'm really saying that - it's awesome. No longer worrying if I'm drinking enough water. In seconds I can consume (or pump) a glass of water. If anything it speeds up the process.

Will we stay together?

This is where the love/hate story pauses. I initially really dreaded having a feeding tube, but in time I learned to love it. The closer I get to getting it removed the more I think how I'm going to miss this little fella. How did it come to this? Time. Time has a way of making everything better and helping us get through the clutter of emotion. As my wise husband often shares "when emotions are high, logic is low". As time passes I see more of the benefits of this device and have embraced it for the perks it has to offer. Who knew? Today, 7 months post op. I've had a lot of nerve recovery, but my latest visit with the ENT doctor had shown that my nerves haven't woken up enough. Food still gets caught. So we are still on a wait and see. When the time is right, I will have it removed.

Written by Kimberly Adams Tremper. March 10th 2023

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