Pleural Effusion-ing

When you've slept as little as I have in the past 48 hours, you also will be allowed to make nouns into verbs.

We still aren't sure the exact cause, but Gabe for sure had a nasty pleural effusion.  Which means that fluid had built up in his chest cavity.  In the first 10 hours after they placed the chest tube, he dumped out over a liter and a half of fluid.

That's a ton.

self entertainment at its finest

Our first night here, I was able to get a couple hours of sleep while he did and when I came back to the ICU at 3:30 am, he looked so much better.  The puffiness was gone and in it's place was the nastiest attitude this side of the Mississippi.  Let me tell you, it was a super fun day.

The Cardiac Floor is very full and we were told that there were 4 people waiting for beds in front of us.  So basically, we'd be spending another night in CICU.  

This will sound strange, but I actually don't mind the CICU.  We get personalized care by awesome nurses, they do all X-rays and labs at his bed, and there's a strange adrenaline that flows in there making the time not pass so slowly.  I swear the second I step out I'm hit with exhaustion, but as long as I stay in there, I could go for days without sleep.

But around 4 on Friday afternoon, we got word that they had a bed for him in the step down unit, so we gathered our things and Grumpy Gabe and headed for our room.

Man.  It was a long afternoon.

Gabe was downright mean and so frustrating.

"Rub my hair.  NO!  Don't touch me, just rub my hair!" 

"MORE pizza!  NO!  Not like that, just cheese!"

I couldn't win with him.  It was exhausting and depressing and man, did I want to pack up and go home.

Fortunately, we were both able to fall asleep by 10:00 and slept (for the most part) through the night.

Since it's Saturday, everything runs a bit later.  Labs weren't until 6:30, X-ray at 9:30.  Those extra hours are precious and were obviously much needed.  Gabe woke up today still not exactly pleasant, but easier to live with.

We went on lots of walks and had an amusing situation where I attempted to push an oxygen tank, a wheelchair, a chest tube box, and a latte back to our room.  Bless the lady that took pity on us and offered to help.  I was about to have to choose between my son and my coffee and, after yesterday, I think you can guess which would have won that competition.

this edible arrangement didn't stand a chance against gabe.

The doctors came around 11 and told me that, while his X-ray was much, much better, he was still draining too much fluid to remove the tube.  Sentenced to 24 more hours.  He was able to come off the oxygen and is holding a stat of 92 on 100% room air.  Not where we want him, but headed that direction.

I'm trying to track the fluid and with all the walking he is doing he's still not putting out much.  I'm cautiously optimistic that the tube may come out tomorrow.  Man, I hope I'm right.

It feels really weird to be here.

I told Amber I'm pretty sure I have a touch of post traumatic stress disorder.  I'm anxious and liable to break out crying at any given moment.  I want to pinch myself and wake up at home.  I do not want to be here.  It's difficult for an over planner such as myself to realize how very little I actually control.  We were so prepared for surgery, even ready for a readmission in the weeks following discharge. But this? Seven weeks post op?  We didn't see this coming.

I had the realization this morning that this is what it means to parent a special needs child.

We've been so crazy blessed that, for the past three and a half years, Gabe hasn't needed a single hospitalization.  Not one.  His little heart kept beating and his body kept working hard and Gabe grew and we looked at him and never once saw a kid that was anything less than a healthy little boy.

And now we are getting a small glimpse of what could have been for him.

This in and out of the hospital.  Simple coughs turning into stay in the ICU.  Looks of pity as you roll through the lobby dragging an oxygen tank and trying not to spill your latte.

Gabe will bounce back.

He will be home soon.  And while I'm under no illusion that this will be our last unexpected hospital stay, I am confident that we can climb any mountain that gets in the way of him being happy and healthy.  We will fight for him and be more observant and be a little extra thankful for each day we aren't here.


Say What? said...

Oh, bless your heart. I'm always at a loss of words for people when they are struggling so much. You do have my prayers, though. ((hugs))

Cristi said...

I know you won't believe me now, but I still want to tell you that life as a special needs mom won't always be this way. One day you'll hear a cough without immediately double-checking to make sure that your hospital overnight bag is still in the trunk of the car. One day you'll have to look up the pediatricians phone number because you haven't called it in the past few weeks. One day you'll spend an afternoon in the pool and not even notice the scar running down your child's chest.

There will be more doctor's appointments and perhaps even more hospital stays. You're a strong mom, though, and I know that you won't let those moments define you.

Hang in there -- you're doing an awesome job!

Gidgets Bookworms said...

thinking and praying for you guys that the speedy recovery happens and your able to get home soon. Sorry it was such a rough day for you guys. Hugs to you all!

PS: I know you probably all ready are on this but when you move have them send a copy to the hospital but also pay for a copy for yourself to have. I did that when my youngest had all the cardio appts and test for her heart murmur. I keep them with me if we ever travel. Her's is innocent heart murmur with no medical intervention but its always good to have when away from your normal doctors.

Michele said...

Keep climbing those mountains, friend! Praying for a short hospital stay!

Sweet Tea said...

Better days ahead - I just KNOW it!
Things will begin to fall back in place when you get home. Gabe will renew his strength and you'll get your spunk back!! :-)