Happy Crap-iversary!

Here’s an anniversary no one ever wants to celebrate: your child being in the hospital continuously for six months. Six months.  SIX. MONTHS.

James was first admitted to Westchester Medical Center on Christmas Night, 2013.  He hasn’t been home since.

When we did the walk of sadness to our first PICU room (where hospital transport wheels your kid in his crib while you trudge behind with a bizarrely large amount of stuff), ICU Dad overheard an attending doc talking to a nurse in front of the room of a little girl who looked around three months old.

“Decrease the methadone dose to 0.1 Q4, and keep the Ativan the same.”

ICU Dad looked at me, appalled.

“How could a mother do that to their child?  That baby is in withdrawal!  Heroin while you’re pregnant? COME ON.”

It's not a joke - this was my literal breakfast when I was pregnant.
It’s not a joke – this was my literal breakfast when I was pregnant (yes, that is kale juice).

I felt equally, righteously, enraged.  Here we were with our poor little innocent munchkin, after doing everything right in my pregnancy (I’m talking kale juice 4x a week), and that mother had the absolute GALL to do drugs while pregnant.  What the hell is wrong with people?

Sometimes ICU Dad and I are embarrassing, judgmental idiots.

Here’s what non-ICU people don’t know: when you put a kid on a ventilator, you have to sedate the crap out of them to keep them from fighting the endotracheal tube and accidentally extubating themselves.  (In early January, I woke up to a Code Blue for James at 2 am after he coughed up his ET tube – that shit is no joke).  The sedation usually includes IV drips of fentanyl (similar to morphine) and midazolam (known as versed, a powerful sedative).  Once your kid comes off the vent, they have to be weaned from the sedation using methadone and Ativan to avoid withdrawal.

Yep, J has been through a methadone wean.  TWICE.

But the alternative to methadone is withdrawal.  You only need to see withdrawal symptoms in a baby for a few minutes to be begging the nurses for methadone.  For your infant son.

This is the kind of crazy shit that you learn after 4 months in PICU.  The kind of shit that no one other than medical professionals should ever have to know.  But we know it all, now.  I sometimes joked with the docs towards the end of the PICU days that I could manage James on a ventilator by myself — they laughed, but no one disagreed.

In those early, naive, idiot days, we pushed the PICU doctors every day for a timeline.  One week?  Two weeks? Three weeks absolute maximum, right?

Morons.

We were on James’ timeline.  We just didn’t know it yet.

Speaking of James’ timeline, two things: first, ophthalmologist follow up was yesterday.  It appears that J has decided that he’s as fed up with hospitals as we are, so he told his left eye to get it together.

Yup, not only did that little peanut smile at me yesterday, he also had his first specialist appointment in months where the worst case scenario was avoided — his left eye pressure was normal!

I never expected the term “normal” to elicit quite the emotional response from me that it does now.

His right eye is still not quite where it needs to be, so he will have to go in for a brief follow up surgery tomorrow morning. But this is the crazy thing about life with little J – he takes you so close to the brink (more surgery in both eyes!?), and then walks you back, so you somehow are now thankful for the thing you were so upset about just a week ago.

Perspective. Nice thing if you can get it.

Snuggling with Max and James at the hospital.  For avoidance of doubt, NOT the same as snuggling on your own couch.
Snuggling with Max and James at the hospital. For avoidance of doubt, NOT the same as snuggling on your own couch.

Second, I’ve been talking to the discharge nurse at the rehabilitation hospital. I’m not saying another word about that because jinxes are real, and I know it for certain after the last 6 months.  When something actually happens on that front, no one will know a thing until I’m comfortably snuggled on the couch with my boys.

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