This time of the year marks the anniversary of so many things… I like to think it is the milestone marking an anniversary of strength, hope, and perseverance. It marks a year of my family and I uniting as a group of love. Supporting each other. A year of my community rallying behind us. A year of so much more…
So the start of this GI journey. In October I stopped eating lunch and dinner as I felt too ill. then on Halloween I realized I simply couldn’t eat. Soon I couldn’t maintain my four liter of water regime for my POTs. I then crashed in urgent care with a heart rate of 240. I was admitted to AFCH and the story started.
November of 2015 was one of many firsts. It was the first time I would meet my primary nurse Nikki. My family on P5. The first time I would meet the GI Doctor who would forever hold a special part in my journey. Meeting the amazing Drs Christina Amend and David Shafique. Truly feeling the power of prayer and love and hope.
It feels like it was so long ago that my first and special GI Doctor Dan O’Connell was sitting down with the hospitalist in November to tell my Mom and me the results of my gastric emptying scan. I was lying in my hospital bed numb, unable to speak. I had just been given my NJ tube and was so hoarse and nauseous. Whenever I would speak or swallow my own saliva I would gag and throw up from the gag reflex of having this foreign object in my throat. I was unable to look in the mirror for a few days, fearful of seeing that tube in my body, on my face. I remember them sighing as they looked at the paper results… “Severly delayed gastric emptying… Gastroparesis.” Those words were the beginning of a fight that I will never give up on. Not until I win.
The next day I remember sobbing to Dr. O’Connell. Expressing my frustration over having this tube in me. I did not want it. I did not want any of it. I remember him telling me that from the short time he had gotten to know me he thinks it will be okay as I was a “resilient young women.” My first and forever special resident, Christina (Chrissy) was the first person to make me feel human again. She treated me as if nothing has changed. And to this day she still does. Being treated that way instantly motivated me to prove that point. My family and I learned how to adapt to this tube and the regimen behind it. And with fear of the future but hope for a recovery, we stepped out of AFCH together.
My Dad and I made a routine out of opening the cans of formula to mix them and store the jugs in the fridge. It was our time to chat. My mom took over the painful job of changing the adhesives on my face, as I cried from the skin breakdown. She helped me each day to style my hair and feel beautiful, even with the tube on my face. As a family we united to battle this.
After regaining strength from the much needed nutrition we began to try new medications. Each one of them failed. One of them led to a dystonic reaction. The medication to counteract that left me unable to see, focus, or remember things for months. It was horrendous. We then felt hopeless after everything we did. So we planned Botox with Dr O’Connell. We battled insurance forever. It was such a fight. But no one gave up. I will never forget the day we found out it was approved and we all cried together with joy as a family.
That day in January, my mom and I blasted Coldplay as we drove to AFCH for my injections. I remember my parents and I being so hopeful. I was planning where I wanted to go out to eat with my friends. When I was wheeled back to the OR the tech told me they were going to give me “my best chance to get better” they could give. And I truly believe that’s what they did.
February came and hit my family and I so hard. I no longer was tolerating nutrition through my intestines. My small intestine shut down. We celebrated Claudia Rose’s birthday within the walls of my hospital room. Before we knew it, my mom was holding my hand as I was having my first PICC line placed to start TPN. I remember crying with joy when I got to pull out my own feeding tube… The first time in 110 days I didn’t have a tube on my face. The feeling was indescribable. It was that stay that I was given the gift of meeting Sarah F, she gave me strength during that stay. So we then went home and hoped for a trip to the motility center of Nationwide.
Blood clots and pulmonary embolisms ravaged my body. Then my appointment at Nationwide imploded with them stating I had nothing wrong… It was a heart wrenching time. Soon to follow came the loss of my colonic function.
It was around March when my team and I decided I needed to go to Children’s Hospital of Wisconsin… Once I was in their system it was a whirlwind to where I am now. Intestinal failure, feeding tubes, drainage tubes, an ileostomy… Yet I met the courageous and fierce nurses and so many more on West 11… Nikki, Virginia, Abbie… So many wonderful people are trying to help me: Dr.s Chelimsky, Kovacic, Basel, Sood, Kliegman, Harmelink, the rest of the Nelson Team. The tireless team of residents and fellows (GI fellows work so hard!)
I look back on this journey and see the list of things I have endured:
- 2 Nasojejunal (NJ) tubes
- 1 string of yarn that was tied into my nasal cavity to hold the NJs
- Loads of IVs
- Multiple violent medication allergic reactions
- Countless ED visits
- 2 rounds of Botox injected into my stomach
- 2 PICC lines
- 1 PICC line site infection
- 3 blood clots
- 1 pulmonary embolism
- Countless endoscopies and colonoscopies
- Moments of supplemental oxygen
- Oxygen saturation below 62
- Harsh clean outs
- 2 blood transfusions
- Multiple PICU stays
- Multiple hyper and hypotensive crises
- 1 code blue
- An ambulance ride
- Rapid response codes
- Traveling to Columbus, Ohio twice
- 2 upper manometery motility studies
- 1 lower manometery study
- 2 gastric emptying scans
- Countless days of school missed
- Weeks upon weeks spent in the hospital
- No less than a hospital stay every two weeks for a year except for January
- A full nuclear transit study of my GI tract
- Going to CHOW
- Being told I had pseudo obstruction
- My gastroparesis worsening
- Full intestinal failure
- A G tube surgery
- Transfer to a GJ tube
- Ileostomy surgery
- Countless nasalgastric (NG) tubes forced through my nose for suctioning
- A 2 week ileus
- 3 rounds of IVIG with 3 infusions in each round for 16 hours each
- Back surgery to drain cysts
- up to three injections daily for medications which were very painful
- CT Scans
- Horrific pain
- Terrifying distention
- My family being separated by distance
- Not being able to babysit
- Not being able to go to school full time
- Not being able to be with my friends
- Not being able to do things for others, which brings me such joy
- Constant nausea
- Muscle weakness
- Hair loss
- Brain fog
- Worsening Autonomic Dysfunction/ Dysautonomia
The list is immense. But it’s just a list. It does not define this journey. What defines it is us. The hope. The love. The joy. The faith. The people I have met. The village I have behind me. The friends. The power of prayer.
Those are all things that will never cease to exist in my life. This journey is going to continue because I am not done fighting, not even close. Thank you to each soul that’s even done something as kind as smiling at my family and me. We are eternally grateful.
Life is a book. It is written and we are always turning pages to figure out what’s next.
I am thankful that we all made it through this together. This year has been a gift of being able to discover the simple joys. This is my anniversary of strength, hope, and perseverance. My most courageous first anniversary yet.