Born @ 27 weeks
2lbs 7oz

Monday, January 20, 2014

ICU Déjà Vu

Shaw came down with a fever last Sunday.
Fast forward a couple days, Michael is out of town on business.
Shaw's oxygen drops.

I load both boys in their pajamas, after bedtime and head to the hospital - a hospital I don't even know how to get to (in a new city) and am speeding with two precious souls in the back.

Shaw falls quiet in the back seat and I'm not sure if he is asleep or unconscious, so I am screaming to him, as my eyes dart from GPS to the road to the exit signs, racing down the interstate. (He was asleep).

My prayer: Stay calm. Be safe. Let him be okay. 

When we arrived at the Emergency Room, I left the doors open - all of them - on 'Big Time' (the name of the biggest car in history).

I grabbed sleepy Shaw and Nash and raced inside an ER, we have never seen before.

The woman at check in took Shaw's oxygen, then raced us to a room, bypassing registration and triage.

Once hooked up to 02, the three of us snuggled in one bed. Nash entertained by a movie (and the excitement), Shaw happy to just have air and I answering questions about insurance and medical history.

There we would stay for hours, battling Shaw's sickness (that was winning). Each increase of oxygen and my anxiety would rise. I'm a mom that knows there is a ceiling and once the limit of o2 is met, he is intubated and another level of scare and care is taken.  I wait and watch and pray.

4am - Nash, Shaw and I are admitted to the Pediatric Intensive Care Unit. Shaw is fighting, confused, exhausted and very sick. The nurses (7 of them) swarm him - he is scared and I am out numbered.  Blood pressure, heart monitors, pulse ox, new bed, new alarms, new faces. It is such a whirlwind. It is too much - and too often.

For the first time, Nash starts to cry. He begins to wail. He misses his blanket. He misses his room. He wants to go home. He doesn't want to 'be around sick people anymore'. He is frightened by the team surrounding his brother.

He just shouldn't have to see this.

I chose Nash - mostly because I could get to him and he was alone.
There were so many hands on Shaw.
They both needed me - wanted us.
But I choose for a moment. I don't know if it was right.

Momentarily, I get Nash calmed down. Now, Nash has a high fever. (You can't make this stuff up).

I ask for Tylenol, but the seven nurses can't provide it because Nash is not a 'patient' of the hospital. My son has a fever of 103 and not a soul in one of the best hospitals in the world can give him tylenol to soothe his fever?

Shaw falls asleep - somehow - amongst the tubes and wires and alarms and strangeness.

Nash is still crying...

A nurse notifies me that now that my other son (Nash) has a fever, we are a concern of Infectious Disease for the other patients and cannot stay in the ICU.

I have one son in the ICU and one that is not allowed and no options.

They tell me they can call a 'volunteer' to sit with Shaw, until my husband gets home.

I can't see straight.
I'm too tired for tears.
I have to leave my baby? My terrified, sick child? To a volunteer?

5am - Somehow we all sleep - sporadically, but we do.

6am - A kind nurse tells me senior management is coming to speak with us about our 'situation'.

7am - She arrives.
She is kind.
She is a Mom.
She lets us stay - only temporarily, until Michael can get home (on an earlier flight), but we can stay in the PICU and be together!!!!! (praise God).

That was the beginning of the last five days we were in the hospital.

Shaw went from bad to worse and even worse than that.
His little lungs have a hard time warding off a cold or any upper airway virus.
Friday night, he finally took a turn for the better. He was awake for more than a few minutes and showed a little of his personality (asking for a piñata for his birthday with a giant banana in it!)
Saturday morning, he began breathing on his own and came home.

This is the happy ending to our story.  A story of fear, then gratitude that Shaw is okay and we are a family again. And we are grateful, believe me - more than anyone will ever know. We are all home and recouping.

But for the first time (at least saying aloud), I'm angry!  I don't know how else to say it.

Maybe this is the first time that I'm alone with my thoughts and had the chance to feel and admit all those emotions, as I typed them... but the feeling left (after immense gratitude) is frustration.

I'm petty thinking that we aren't celebrating a holiday weekend and we are in the hospital.
I'm disheartened that I haven't seen my husband for a week, except in the hospital parking lot, where we 'tag' each other out to switch caretaker roles. (He doesn't even know half of what I have said above yet).
I'm angry that Shaw has to endure being poked and prodded. He screams out when any nurse or doctor enters his room and buries his head in our shoulders.
I hate that I have to tell Shaw, "This won't hurt" or "This is going to make you feel better" or "Shaw, this will only last for a second." I hate it. I hate it. I hate it.
I'm inconsolable at the thought that we tried to FaceTime with Shaw in the hospital so Nash could talk to him. One look at Nash and Shaw turned his head. He wouldn't even acknowledge him or home.
I'm annoyed that I have to tell Shaw not to run, yell, play, race cars or wrestle (i.e. BE A BOY!) because he will exhaust himself and not be able to breathe.
I'm disappointed that I get frustrated with the boys, when one pushes the other over or one sits on the other's face, or when I'm tired or my tank is empty. It is a gift.
I'm sad to hear Nash tell strangers at the grocery or at the park that his 'brother is very sick and in the hospital'.
I'm enraged - not just for me, but for what is happening to our family, our boys - what is their norm.
I'm heartbroken as I look at the parade of medicines for my son that line the counter.
I'm irritated that no one really understands.
I'm mad at myself for even typing this tirade.

But I am determined to not let this define us - or my boys.

And I know...
I know I'll feel differently tomorrow.
They will smile or giggle or say something outrageous, sending us into hysterics again and all will be right in the world.
I know my anger is short lived.
I'm positive.
I know we are lucky.
I know we are blessed.
I know it can be worse - and has been and it can be worse than that.

And then I take a breath and realize this is NOT the hardest thing we have been through.  We have a lot of gifts.

But nevertheless, tonight I am angry or sad or frustrated or just feeling - because I haven't had a chance to yet.

I don't ever want to be 'normal,' (whatever that is), I just want the boys to be happy.
Seeing them scared and hurt - it's not okay.

“However long the night, the dawn will break.” African Proverb


Jenn Scrabeck said...

God Bless you and your family for your strength! You are amazing and definitely have a fighter on your hands. We will continue to send prayers for the Mighty Bee!

jess said...

Wow, Candace, that is scary. And I totally understand your anger. But our kids can do hard things. And WE can do hard things. Not because we want to...but because we have to. I find it makes the good times even sweeter.

You all are in my thoughts are prayers always.