Posts Tagged ‘hospital’

On Tuesday, Jonah was taken back to the hospital, this time not only because of severe behaviors but also because he seemed to be struggling to poop and he looked pale and acted really lethargic.  When they called me, I decided to drive down.  I left work around 11am and when I got to the hospital in Poughkeepsie, Jonah was asleep under the covers with a pillow over his head.  All I could see of him were his sneakers, still on his feet, at the bottom of the bed.  He has three teachers in his classroom of 5, and one of them was there with him.

They had taken an x-ray of Jonah’s tummy and found impacted poop, so they woke him up and we coaxed him into drinking a seltzer-like laxative.  He was all sweaty from lying in his clothing under the covers and he looked at me in amazement.  “Car ride,” he croaked, more a statement than a question.  His teacher was awesome with him, helping to keep him calm and telling me how loved Jonah was at Anderson.  “I’m not just telling you that because you’re his mother,” he assured me.  Poor Boo was bored and confused, but after another hour or so he finally pooped and they let him go back to the residence.  I drove home in a daze.  Before I reached the house my car started to shake.  I couldn’t get the hood open to look at it, so I dropped it off at the shop.  Turns out they had to break it open to get in the car.  It was some crappy icing on my shitty cake.

Yesterday his main classroom teacher e-mailed me and was so kind.  She asked what she could do to help and if I had any questions, and she said Jonah had a good morning (and included two pictures to show me).  I am appreciative.  I am grateful.  I love that Jonah has teachers, specialists, therapists, direct care providers, and other workers who watch over him with such compassion and caring.  Were it not for all of them I could not do this at all.

Got the car back last night, and this morning Anderson held a meeting about Jonah with his behavioral specialist, his psych doctor, teachers, and nurse.  They called me to join the meeting and told me he was on his way back to the hospital for another psych evaluation after 12+ severe aggression incidents this morning.  And so this is hospital visit #3 since Monday, and it’s beginning to feel an awful lot like this time last year.

This doctor is a new one, and she asked me if I thought Jonah might be bi-polar.  “I tend to think there’s a co-morbidity with something,” I answered, “whether it be mental illness or seizure activity.  Something is going on.  There is never an antecedent.  You’ve charted every possible thing from bowel movements to times he eats and sleeps, for five years straight. There is no discernible pattern. ”

Her answer, as it has been before, is to raise his level of medication (Clozaril) while adding a prn of Klonopin  (as needed).  She suggested the possibility of adding Lithium, but doesn’t want to do that right away.

I have read (and I really appreciate) all your comments and well wishes.  I will try to come back to FB and re-join the Extreme Parents group so I can gather info and exchange ideas with other parents who’ve had experience with Kennedy Krieger and severe autism with aggression.  Andy and I are working through disagreements about what to do here.  Sending Jonah to KK would be a huge thing.  Just the thought of transporting him there is a seemingly insurmountable obstacle.  We want to make sure we are doing what is best for Jonah, both in the short and the long run.

I don’t want to go through what we did last year again. But it looks like that’s what’s fucking happening and once again we find ourselves in the frustrating position of having exhausted all ideas and resources.

When I reach out to the “experts” I find and they start asking me things like “What are the specific behaviors and when do they most likely occur?” I want to bang my head against the wall – not because I do not appreciate the attempt to help us but because people never get how far beyond the beyond we are at this point – how we are breaking new ground with this child and his behavioral (and physical) health.

How we’ve already tried that.  And yes, we’ve already looked at that.  And then there is silence, because nobody can chart us a path through this kind of journey, once they realize we truly are in a territory they have neither seen nor can understand.

We have to do it ourselves, and it’s scaring me to death.

I have been going to work and coming home and going to bed.  It’s like I’m a device on low battery that you’ve got to use as little as possible to preserve its life.  I am angry and I feel helpless.  I’m shaky and sad and frustrated and pissy.  I’ve been depressed lately anyway – I usually am this time of year – and I’ve thought that Jonah’s behavioral crises at the same time last year and this year might be something seasonal.  But mostly I’m staving off panic, a deep and unwavering fear.  There is no afraid of.  There is only the being afraid and the trying not to be afraid.

A waking life of fighting the fear, and a grateful yielding to sleep.

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Today, a poem I wrote some years ago, about Jonah’s birth:

When finally the doctors sigh,
speaking masked amongst themselves,
and cut you
out of me, I am but a writhing animal,
drugged and brazen-blind by dazzling alien lights.

Then there are pillows, and silence,
and you are sleeping on my chest

and suddenly I have a star, and the moon,
and everything else unceasingly celestial…
my view so clear I memorize the shape
of every constellation.

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On Sunday, the 10th anniversary of 911, my dad and I drove down to visit Jonah.

Ten years ago, September 11th was a Tuesday.  I worked part time for St. Francis de Sales Church and I was pregnant with Boo.  I had just started feeling him move around inside me – a tiny, timid mouse nibbling at my insides.  Wow.  I’d been so excited the day I learned I was pregnant – June 14th, 2001.

Then, just 3 months later, September 11th.  As I learned of one catastrophe after the next, everything went into slow motion.  All action ground to a halt.   Like everyone else, I was in shock.  I felt grief and anger, terror and outrage.  I felt the eerie silence of the skies when all commercial planes were grounded.  And when planes did begin to fly again, nobody could look at them without remembering 911.

What shitty timing we have, bringing a baby into this brave new world of terror & fear, I thought.

As it turned out, growing a baby inside me and taking care of that teeny baby gave me hope again.  Of course, after 911, things were never the same.  But I’d hold Jonah in my arms and wish a mother’s wish:  maybe he’ll be the one to change the world.

On the drive down to visit him yesterday, I asked my father all about politics and presidents.  My dad’s a history buff and I like listening to his perspective, especially about things and people who made history happen before I was born.   My dad’s got quite the objective viewpoint, lending his ear to Bill O’ Reilly and Michael Moore alike before forming an opinion.  So I listened, and we talked, and it rained, and I thought oh shit, we’re not going to even be able to take Jonah to the playground – but we were lucky.  It stopped raining and by the time we got to the school, the ground was dry.  At first Jonah backed off, but then walked toward us, asking car ride?  I told him we were going to the playground instead.

He was a good boy, little Boo.  He and my dad (Jonah calls him Pa) went on the swings.

Already, Jonah has a favorite swing and goes to it every time.

Jonah laughed and sailed through the air, asking mama push?

I pushed him and pushed him.  On and on he sailed on his chosen swing.  Back home he was never all that interested in swings.  I watched him and wondered why, and I pushed him, and he let Pa push him, and I pushed him some more until it felt like a workout (which is lame, I know).  Then we walked up to the visitor’s center, where we gave yummy grapes and contraband black soda to a joyful Jonah.

Oh yeah!

In Francis Hodgson Burnett’s book The Secret Garden, wise Susan Sowerby says, “the two worst things that can happen to a child are to always get what he wants, or to never get it.”   So he gets his black soda once in a while.

After our impromptu picnic we walked down to the pond and back up to the swings.  “Who’s that?” I asked Jonah, pointing to my dad.

“Pa,” he said in his small, sweet voice, smiling.  He was good, little Boo, if a little hesitant.  We brought him back to the visitor’s center where he used the potty like a pro, and back again to his beloved friend, Swing.  But eventually it was time to go.  I prayed he’d let us go without a care, which I knew was a longshot at best.  Of course Jonah panicked.  Home? he cried.  Home?

I told him daddy was coming later (he was, thank God) and both my dad and I kissed him goodbye,  but when a care worker started to guide him toward the house, he bolted after me and clung to my side, wailing.  Twice more we got him back to his house and twice more he squirmed away, running fast after us, now openly crying.  Oh, sweetheart, I told him.  It’s okay.  Snack is soon, and daddy’s coming.

Finally he was inside his house, and my father and I walked away faster, not looking back.  Faster.

I’m grateful my dad let me weep and feel sorry for myself for as long as I needed.  He took a slower route home – hurting more than I know he let on.

I spent the rest of the night unpacking and putting clothes away in a sad daze, and when I fell asleep I had foggy, uncomfortable dreams.

This morning I wanted to turn over and go back to sleep, but I knew I couldn’t.  If you lose a Monday in my job, it makes Tuesday ridiculously hard. 

Mid-morning my cell phone rang; it was the nurse at Jonah’s school.  She told me Jonah was okay, but he was taken by ambulance to the hospital because he had a bump on his head and then he threw up, and they wanted to make sure he didn’t have a head injury.  Then, not 15 minutes later, she calls again to tell me he’s being transferred to a larger hospital in Poughkeepsie.  At this point I really started to worry.  I’m glad they were over-cautious but the two-hospital gig was unnerving.

Andy went to see him and turns out he was okay – they think he maybe had an allergic reaction to mosquito bites.  (He did have 4 or 5 bites on his forehead when I visited him with my dad).  They brought him back to his house and he rested for a while.

So for a few hours today I was trying not to panic, but inside I was terrified.  Heart through the wringer, two days in a row.

When I called his house around 8pm to see how the rest of his day was, they assured me he was fine.  He played on his scooter, ate well, and went to bed just a little early.  I called Andy and my mom to relay this latest news.

Now I’m sitting in a rocking chair and half-watching All in the Family as I type.  I’m breathing deep, in and out, smiling over at cat Almanzo on his scratching-post perch:

His paws make a heart when he puts them together, sweet thing…

…and dog Jack is hanging out looking cute:

M and I are both typing.  I’m thinking of Boo, grateful he is okay.

There are boxes and bags everywhere, but we’re ignoring that because we feel like it.  I’m exhausted and I’m writing like it.  I’d like a day where not much of anything happens.

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