Kintropy In Action

For the record:  I never wanted to be a nurse.  I am not particularly squeamish.  It's just that I had my fill of doctors, nurses, and all-things-medical growing up.  Picture a family tree dressed in diagnoses like spina bifdia, hydrocephalis, weak connective tissue, severe asthma, epidural and subdural hemotomas, Rheynauds Syndrome, color blindness, and probably several things I'm forgetting.  We were a diagnoses-rich family; our medicine cabinet flowth over.

When my daughter, Hannah, was born, however, nursing found me and my family.  Hannah moved from eight hours observation to two weeks in NICU.  Janette and I took her home two weeks later with a tank of oxygen, an apnea monitor, g-tube and feeding syringes, and the best wishes of the hospital.  My wife, two-year-old son, and I were going to raise Hannah at home, but we were going to all have to learn a new vocabulary and intensive medical skills to do it well.

Within six months, we added new diagnoses and equipment to the mix:  a trach, 24/7 ventilator support, surgeries completed and scheduled for the future.  Also at six months, we joined Oregon's MFCU program.  MFCU is a Medicaid-wavier program that provides in-home nursing in place of what used to be permanent, institutionalized care.  We signed the dotted line, promising to be a parent-nursing partner within the program, carrying our weight both as parents and parent-nurses in the care of our daughter.  Thus we launched our nursing careers.

We were lucky.  We met many people over this period who had kids with significant medical needs who, because they were not ventilator dependent, did not qualify for in-home nursing.  We had one-on-one nursing for our daughter sixteen hours a day, on average.  We provided the other eight hours of nursing, learning by working beside nursing professionals.  We learned to suction.  We replaced g-tubes.  We reinserted trach tubes (many, many times).  We were experts in the medical care of one patient:  our daughter Hannah.

Being both parent of child and nurse of patient was a wild ride, punctuated by both humor and terror.  In neighborhood get togethers, our peers noted their children's developmental progress in steps walked and words talked; we, in minutes, then hours, breathing without ventilator support (quite the show stopper, by the way, in a room full of non-nurse parents).  When crisis hit, we took the necessary medical steps, pushing parental concern to the back while bringing our nursing knowledge and experience to the front. 

We met people over the years who were also medical experts in their children.  They were parent-nurses, but they had little to no additional professional supports.  While we were swapping best practices with our daughter's team, they were doing the same, often wonderfully, but without the support network we enjoyed.  We connected up with these families when we could, and we all swapped stories.  We traded tips.  We compared doctors and medical histories, often finding new links to explore.  Our connections to nurses and other families became our community.  Much like nurses who work together in a hospital, I imagine, we now found our friends in the lay and professional nursing networks we found ourselves in.

Jump forward now to a month ago when we packed up Hannah's ventilator and bid it good-bye.  Hannah's trach tube had been removed.  She was breathing completely on her own.  We no longer needed the ventilator.  We were transitioning.  Nursing and medical needs had overshadowed our parental role for at least half of the last four years; now the scale was tipping strongly in the other direction.

Soon we'll be losing two-thirds of our nursing hours as Hannah transitions out of the MFCU program.  We will see the nurses that we've all bonded with over the last four years less often.  Then they will go away.  Once they are gone, however, we will retain our nursing knowledge (and some of our nursing duties, still).  We will move our focus more strongly to PT, OT, and advocacy for our daughter.

Every so often, Janette and I play with the idea of returning to school and earning a professional degree as RTs or of beginning a medical foster home (okay, that's not Janette's - it's mine).  Somewhere in the background, we want to take advantage of our four year's experience and build on it.

But in the meantime, we are returning nearly full-time to our other jobs as our children's parents.  We're putting the suction machine up on a high shelf and pulling down the reading and math flashcards instead.  We're preparing to set aside some of our intensive nursing training, at least for a little while, and enjoy something of a respite with our kids, proud of the time and progress we've all made together, content to be mostly healthy, happy, and intact as a family.

-- Dad