My son, Jackson, was born full term and healthy, weighing 8 pounds, on Halloween 2012. Except for acid reflux that developed shortly after birth, he had no problems—until April 5, 2013. That typical Friday morning changed our lives.
Jackson was unable to keep down any nutrition that day.
He still can’t.
Within a few days, he was admitted to a hospital for dehydration, where he lived on sugar water and IVs for two weeks. He couldn’t keep down even an eyedropper full of formula, breast milk, or anything else. He dropped from the 50th percentile for height and weight to below zero.
He was fighting for his life, and no one knew why.
Even today, his primary condition is a mystery, though Jackson has been diagnosed with 38 secondary conditions. His body rejects saliva, and he can’t live without a feeding tube. We were referred to Gillette Children’s Specialty Healthcare for palliative care in May 2014. We see Scott Schwantes, M.D., and he is absolutely amazing. He has developed a plan to manage Jackson’s pain and improve his quality of life. We can't fix Jackson's conditions, but we can manage them.
Jackson used to have episodes of autonomic neuropathy (also called dysautonomia)—complete with heart-wrenching, full-body nerve pain—up to six times a day. Dysautonomia is a very complex dysfunction of the autonomic nervous system. Jackson’s temperature would swing from 93 to 103 degrees every few minutes. We are now down to six episodes a month on average, and his temperature usually ranges from 94 to 97 degrees. Gillette understands the condition and is helping us manage it the best that we can.
We’ve developed a good handle on things, especially compared to what it was like before we began coming to Gillette. I’m forever grateful for the quality of care and depth of discussions that take place during appointments. For example, last summer we saw Marshall Taniguchi, M.D., a pediatric rehabilitation medicine specialist. He was going to assess when Jackson could begin wearing a feeding tube backpack, but he did so much more. He assessed Jackson’s symptoms at the time and referred us to several specialists to help us with many issues. Each specialist looks at the big picture, not solely their own specialty.
That appointment day, Jackson received a helmet to protect his head from his frequent falls. We have since seen urology, neurology, and sleep medicine specialists. Although Jackson is living with machines, and his daily challenges can be severe, he is thriving. He smiles and plays and is a little boy. He laughs, giggles, is learning sign language, and claps every time he does something right.
I make a point of giving Jackson a childhood in between medical life. I refuse to have him remember only the medical aspect of his life, so we try to do a lot of fun things. He learns at his own pace, works hard at therapy, can tell a story with his eyes, and enjoys life to its fullest. One thing we’re trying to live by is the quote above Jackson’s crib: “Let him sleep now, for tomorrow he will move mountains.”
Jackson inspires everyone he meets, including me. Despite countless tests, procedures, lab draws, doctor appointments and therapies, Jackson is the happiest little boy ever. Our journey isn’t over, but we are so blessed. I thank God every day for the angels he sent to us, including everyone at Gillette. My son wouldn’t be where he is without them. I can't thank you all enough. We have a long way to go, but I feel safe under your hands.