New Normal

This isn't the first time I've used the expression "new normal," and I'm sure it won't be the last. Each time Lennon has a routine appointment, ER visit, or extended PICU stay, it seems we have something new to implement, adjust, or research.

Our most recent hospital stay was long and difficult.  It was our first real test of advocating for our son in a situation where the staff was unfamiliar with him. To be honest, I think dad and I both felt like jerks for questioning the nurse, but we know our son better than that nurse... and the resident on staff was going off the nurse's reports.  When our normal doctor came on that night, she assured us that we did the right thing, which helped.  I have always been leery of staff who don't know Lennon, but I try to be patient and give them the benefit of the doubt.  It isn't that I think they're not capable; it's that he's not like anyone they've ever seen before... and new nurses try to treat him like he is.

Over the last 14 months, we've had to add words like manifestation, baseline, presentation, myoclonus, desat, and episode into our vocabulary.  Doctors and nurses ask for a baseline each time we are in the PICU, but it is hard to answer, especially when the MRI shows 2 new affected areas in the brain.  Baseline going into the hospital in April was much different than baseline even now.  In our last stay, Lennon lost his voice and his swallow. His voice came back first, although he is still fairly quiet.  His swallow came back this week. We have been able to give him a few bottles, pureed fruit, and yogurt.  Now that all his medicine is given by tube, hopefully he can enjoy the full flavor of his foods.

Shortly after coming home, we were visited by representatives from home health and our insurance company. They are working to get us set up with the nursing and attendant care through the TA waiver.  As much as Lennon loved daycare, it's just not a great option for him. What gives most kids a runny nose and cough can, as dad says. "almost take him out." So for the next couple of weeks, grandma is staying home with Lennon so that dad and I can work.  Hopefully we can get her approved as an attendant so that she can be compensated, at least somewhat, for the month she is taking off work to be here.  Nursing care will probably start after school is out.  This is a new normal that I am looking forward to.  I am optimistic about finding a nurse that will stick with Lennon for the long haul.  Having nursing care will not only be reassuring, it will also allow me to spend more time with brothers, sister, and dad and in my classroom.

This new normal we are adjusting to includes more medical equipment, more monitoring, more prescriptions, more paperwork, more frequent doctor visits, more skilled care, and more unknowns.  This new normal also changes every day as Lennon regains his strength and as his brain heals.  We are hoping for another good summer. Last year we went from June-October without any hospitalizations.  For tonight, I'm just happy not to be spending Mother's Day in the PICU again.  Instead, we had a lazy day at home with all the kids and short visits from my aunt and mom.  Let's keep this our new normal.