Every day is the same. I wake up, push meds through my tube, take a bath, push meds again, lay in bed, stare at the ceiling, push more meds, listen to an audiobook or podcast, and push meds one last time before going to sleep. Thank God for Millie. She brings carefree energy to each day and never fails to bring a smile to my face. Millie breaks up my monotonous days by reading me devotionals, helping me make bracelets, dictating school work aloud to me, and laughing with me when my tube repeatedly gets clogged.
Each night, my dad sleeps in the bed next to mine. The loud beeping of my tube awakens us periodically throughout the night. Most nights, my tube gets clogged and bursts with formula all over my bed. Sometimes, I do not realize that my tube is spewing formula until it has soaked my hair and I smell the sour milky odor. Without fail, my dad wakes up and cleans the mess. He covers my sheets with towels and finds me a change of clothes. Now, we know that the side port on my tube needs to be taped closed to avoid leakage. He lovingly stays up with me all night long, although he has to wake up at 6am to take my brother to school and go to work.
I am utterly dependent on my family, as I still can’t sit up or stand. They help me bathe, use the bedpan, set up my feeds, brush my teeth, crush my medications and push them through the tube. Bathing is an ordeal that leaves me absolutely wiped out and exhausted. Although I hate feeling dirty, I try to limit the number of baths I take a week due to how much it wipes me out and accelerates my pain. Someone has to help me into the bath while I start the water and remain completely horizontal the whole time, meanwhile soaking my neck brace. Hot water makes me feel lightheaded and faint; sometimes making my arms and legs red and itchy. I’ve never missed showering more, and I definitely never thought that merely bathing would be such a struggle.
My mom and youngest brother, Sutton, often come into my room to keep me company, but my siblings are very cautious when visiting me to prevent the risk of germs.
I receive IV fluids twice weekly to hydrate me since I can’t drink water by mouth. Home Health nurses check in on me at least once a week to take my vitals, and my new physical therapist, Kyle, comes to the house to work with me three times weekly. I am still too fragile to work with my outpatient physical therapist, Susan Chalela.
In early March, I began struggling with visceral hyperalgesia. This condition occurs when one has increased sensitivity in the internal organs of the body. Visceral hyperalgesia caused me to stop tolerating my ideal rate of feeds. I had to transition to 24/7 continuous feeds and slow the rate significantly due to the excruciating pain in my stomach and esophagus. I intensely feel the flow of formula passing down my tube which frequently moves slightly in my esophagus leaving me in agonizing pain because of my hypersensitivity. Needless to say, this has caused my nutrition to suffer. My dad connected me to Dr. Eli Penn, a GI doctor from Macon, Georgia who specializes in the treatment of EDS patients. Having EDS himself, he is very empathetic and dedicated to helping others inflicted with this condition. He diagnosed me with Mast Cell Activation Syndrome (MCAS), and I recently began taking Singulair, Cromolyn, and Zyrtec to calm down my mast cells. We are exploring additional treatment options and have a virtual appointment with a specialist in MCAS, Dr. Anne Maitland from New York.
Because I was not able to run my feeds without intense pain, I was beginning to lose more weight. Also, my doctors believed that the tube would likely need to be in place long-term. Therefore, Dr. Penn, along with many of my other physicians, agreed that it was time to transition to a surgically placed gastrostomy-jejunostomy (GJ) tube.
For me, I think the hardest part of chronic illness is going to bed every night knowing that when I wake up, I will have to face the same battles.