LIFE UPDATE: 10/8

I’m sure some of you heard about what I’ve been going through medically, but in the past fourish weeks I underwent 3 life saving surgeries at UNC. I had a feeding tube placement procedure done at Wake Forest Baptist Hospital at the very beginning of October that resulted in a terrible "catastrophe". The adhesions from my previous three surgeries (for SMAS and MALS) made placing a GJ feeding tube more difficult than before, and the Interventional Radiologist said she put her full force to get the tube through. We believe that this force along with my complex anatomy, made it so my stomach disconnected from the wall and left a giant hole spilling my gastric contents all throughout my body. This led to infection pretty much everywhere for over 6 days and my doctors here worked very hard to get rid of it. Thankfully we had an appointment scheduled with my complex care physician, Dr. Michael Steiner, 36 hours after WFBH discharged me. I actually don't remember much of this, but my mom and step mom told me that Dr. Steiner was very worried about my condition and admitted me into the hospital within only an hour of seeing me. At this point my pain was so severe, it was incredibly difficult to breath, my heart rate was around 150, and I had gained 24 pounds of swelling in 5 days (from the tube procedure mishap). Something was terribly wrong. Within minutes of seeing me, Dr. Steiner pulled together so many teams of doctors researching my case, and I know that every single one of them helped save my life. My medical teams here discovered that my heart, lungs, liver, kidneys, and intestines were all compressed with bacteria-filled fluid from my stomach. The infection was so bad that I went into tachycardia and stayed that way for several weeks. Once the CT scan discovered all of this I was rushed to emergency surgery in a matter of minutes. I had so many teams of doctors caring for me with tears in their eyes. The surgeons took this pretty seriously - a matter of life or death. My system was in such bad shape that they couldn’t close me after my first two surgeries here. So they left me on the table open, which brought all sorts of worries. I was on a ventilator for seven days straight and was in and out of consciousness. Luckily I don’t remember much of these scary moments but my family reminds me everyday of how truly scary it was and how lucky we are that we got through it. And my doctors (Complex Care, GI, Surgeons, Neurologists, Infectious Disease, Cardiologists) here at UNC made that happen. They have provided such great care and have truly listened to me and my every symptom. 

We recently learned that I have developed another infection called C. Diff as a result of being on antibiotics for so long. My current infection has literally felt like a never-ending stomach bug. Thankfully, we are now treating that so hopefully the nausea and ickiness subsides soon. 

Recovery is never easy. I've been through enough surgeries to know that one. But any progress is good progress. I am constantly reminded of that. For me, it has felt like I've experienced a lot of regression. I mean since my surgery I developed a blood clot that requires injections twice a day, had to have a drain placed to get rid of fluid in my pelvis, went into tachycardia with my heart rate at 200 with a routine PICC-line placement that placed me back in the ICU, and now this stupid infection. BUT at the same time, while I've had these setbacks, I've also made a lot of progress. I am now able to sit up on my own, my surgical pain is improving significantly, I am tolerating my tube feeds really well, and my surgeons are very happy with how my incision is healing. It's sometimes hard to recognize the good when new problems arise, but my family constantly reminds me how proud they are and how excited they are to see me moving forward. 

Right now my hospital room overlooks Kenan Stadium, and I can't help but wish I was there cheering on the Heels with every other Tar Heel. I went from being a full-time student, having fun with friends and experiencing my second year of college, to being stuck in the hospital secluded from everyone. It's hard. When you're stuck in the hospital, it sort of feels like your life is on pause and everything around you is still moving. With my SMAS and MALS, I learned what it was like to miss out on things, and it wasn't easy. But I learned to count my blessings. I fought really hard to get my life back, and I was able to experience an entirely normal (despite being a COVID year) first year of college. This hospitalization was definitely unexpected. I had a routine tube replacement surgery that left my body in such a bad condition that if we hadn't gotten to my surgeons when we did, I probably wouldn't be alive. And that's really terrifying. I am so incredibly blessed to be here today, and while this recovery is long and challenging, I am hopefully on the upside. 

To those of you experiencing challenges similar to mine, keep fighting. There have definitely been moments during my hospital stay where I've wanted to give up because of how horrific this all was to wake up to. But I'm only 19, and I still have a lot of life to live.

I am hoping that by sharing my story I can help others prevent a catastrophe like this from happening - especially to those of you that may need a GJ feeding tube placed for nutrition. 

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