Déjà vu All Over Again

(Written March 22, 2015)

In January, when I last posted, I seriously considered changing the name of the blog. I mean, the holidays sucked, but James made it through and we were home and happy – I thought continuing to call myself “ICU Mom” was not really appropriate any longer.

Well, approximately 45 ER and ICU days and nights later, I think I’m safe to stick with it for now.

It’s been a mentally and physically exhausting three months.  Bright spots here and there, but exhausting.

This time last year, we were trapped in our third PICU month, with James unable to wean from high flow oxygen until a dogged attending physician finally made enough consultation requests to get J’s Pierre Robin Sequence diagnosed. What followed was more waiting while James got stable and big enough to withstand the mandibular distraction surgery.

It was an incredibly, achingly frustrating period.  Sitting in a hospital watching your sick kid try to gain weight … I shudder just thinking about it.

This winter, despite rarely leaving our home and the constant and incessant hand washing, housecleaning and glove and mask wearing of every person around him, James has been sick.  A lot.  Mutated, vaccine-resistant flu at the end of January (10 PICU days), home for three weeks only to catch rhinoenterovirus (10 more PICU days), home for less than 24 hours then back to the ER and the ICU for another 4 days, home for 6 days and then back to the ER and the ICU where … we have now been trapped since March 9th, with James unable to wean from BiPap and high flow back to his home oxygen baseline.

The doctors say he is just worn out from the winter. He just needs time in the hospital on increased breathing support to get strong again, to fix the microaspiration that they believe is causing the constant respiratory infections, and then we can bring him home (with a new breathing contraption, BiPap, in tow).

But this winter, mom is back to work full time, and big brother is suddenly noticing Mommy and Daddy never seem to be home at the same time. And, frankly, it takes a Herculean effort not to completely lose your shit when you think about everything James has come through in the past 12 months … only to end up in the exact same f*cking place.

ICU Dad and my weekly schedules are madness right now. ICU night with J, straight to the office in the morning, straight home afterwards to get Max, feed, bathe and put Max to bed, unpack and repack for the next night at the ICU, collapse into an uneasy sleep where we’re often awake texting each other in the middle of the night from the anxiety of it all, repeat.  During the workday, our indomitable nanny P spends the day with J at the ICU, feeding us constant updates via text.  If not for the most dedicated set of ICU grandparents that ever lived, we would never even see each other.

The doctors keep telling us: “Just get him to spring, and then you will go home and he will get strong. Next winter will not be like this.”

Get him to spring. It’s just a few weeks away. We’ve got this.

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