The Trachs on My Windowsill, Hospitalization, and Lemonade

I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill.  Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud,  this is beyond medically complex. This is life and death."

There is no clear definition of the broad sweeping categorization, medially complex. It usually means an individual who needs the coordinated care of multiple medical disciplines and therapists, both at the hospital and community level. Nathaniel fits that category. But so does my friend's son who has Cerebral Palsy, can't walk, and uses a talker. Our lives have much in common. But then again they don't. He rarely needs hospital support for a virus. He doesn't currently qualify for nursing care.

Medically fragile is another category I have heard physicians and agencies use regarding Nathaniel. I sense this is sometimes the most severe label when qualify an individual for support services. Oklahoma Health Care Agency defines medically fragile as "...a chronic physical condition, which results in prolonged dependency on medical care for which daily skilled intervention is medically necessary..." It seems some states and Canada have another category, reflecting even more drastic needs - High Intensity Care and Technology Dependent. Nathaniel qualifies. Two or three times over. Simply being G-tube dependent places a child in the category. This feels more logical. It explains the tracheotomy tubes on my windowsill and bio-harzard bags hanging from an infant's crib. Nathaniel is not just medically complex or medically fragile, Nathaniel needs high intensity care and is technology dependent.

My brother saw this months into our caring for Nathaniel. I am just realizing it. Standing outside Nathaniel's emergency department room yesterday, the attending told me he didn't yet have a plan B to re hydrate Nathaniel if the ultrasound machine and the venous access nurses failed. No plan B yet. I hardly blinked. But I should have because that is not a typical parent-doctor conversation. "Let's give them some more time," he said as he walked away to the next room. They had worked on Nathaniel an hour already. The first nurse called for co-worker to come try. They know my son beyond first name basis. They know him toe to hip and finger tip to shoulder when they get the page to come to emergency. They are frustrated when their technology and skill is not enough. They asked why he does not have a port. They explained how drastic the measures would be if he were in respiratory distress and they could not find a vein. I am glad to know there are options beyond six sticks with the vein team and their ultrasound machine, but that was a conversation I want to unhear.

Labels and words matter. They help us understand and explain the demands on ourselves, our family, and our work. They help us find others who are facing similar daily struggles. They help our medical team, therapists, and support system better understand the challenge ahead of all of us. This is harder for Nathaniel, his parents and siblings, doctors, therapists, and church family than medically complex. I am just giving myself permission to feel that. I still error on wrong thinking constantly. "This is easy. No harder than what ______ (another parent of a special needs child) deals with." I am not sure why this is my go-to reaction. Maybe to undermine our own efforts and sacrifices. Maybe to try to normalize Nathaniel. Reality is accepted slowly when the news is difficult.

Nathaniel has had a stomach bug since early Thursday morning. For everyone else in the family, it was a twelve hour thing with a lingering headache. Nathaniel's Thursday nurse and pediatrician's office created a care plan. It didn't work. I took him for an office visit on Friday morning and we, his primary care physician and me, two people who know him very well, developed a new plan.  It didn't work. Airway surgery solved two problems only - the delicacy of Nathaniel's airway and aspiration.  We have many others issues. Chronic vomiting, whether secretion/cough induced or virus induced and the subsequent recurring dehydration, is one of them. He averages five hospitalizations a year for dehydration. They usually occur April to November, because we live in a bubble during the intense flu and cold season. We keep him at home; we do not allow visitors; therapy is cancelled if the therapist has something. Living in a bubble is hard, but it keeps him out of the hospital. Going in and out of the hospital is harder, especially on beautiful spring weekends. Rich and I had planned to set up a tent in the back yard yesterday and "go camping" with Nathaniel. The backyard already felt like a compromise, but it would have allowed us to move Nathaniel indoors and be connected to his machines when his nurse came at nine. After that Rich and I were going to sit around a backyard fire with a bottle of wine. Maybe even sleep all night outside pretending we were on some grand adventure.

Instead of wine, I am going to pick up some lemonade on the way back to the hospital this afternoon. A different grand adventure is needed. A Facebook friend had a one word post today - #lemonade. I am not sure if she just tasted some really fantastic lemonade, if life just handed her a bunch of lemons, or she is referring to Beyoncé's new release this weekend. Regardless, her simplified post reminded me to do the best with what we've got. This weekend, backyard camping plans foiled, Nathaniel having his first of what will likely be more spring/summer hospitalizations, feels like being handed a basket of sour lemons after the success and joy of a completed airway surgery. Medical complexity is hard. Medically fragile is harder. High intensity care and technology dependent is hardest.

#lemonade