This morning, Gabe didn't wake up when they flipped on the lights at 3:45.

So his first greeting of the day was a needle going into his veins to draw a vile of blood.

Good morning.

He flailed and screamed and hit me as hard as he could as I tried my hardest to hold him still.  I knew the more he moved, the longer it would take to fill the vile.  So I gritted my teeth and let him look at me, eyes full of betrayal.

Just as I got him to calm down, to let me sooth him, the respiratory therapist walked in.

During the day, Gabe will tolerate the breathing treatments.  Don't get me wrong, he hates it and yells, but will eventually accept it.  That early in the morning, he wants no part of it.  And I don't blame him.  The tech, who is used to being up at that ungodly hour, tried tickling his feet, making jokes with him as he screamed at the very tip top of his lungs.

Not from a morning treatment.

Finally, in a not very nice way with some sailor words mixed in, I told him this wasn't an ideal way to wake a 4 year old who had already been through hell.

Gabe did eventually fall back asleep, doing the whimper cry as he slept, letting me know he was sad right down to his core.

He got 30 minutes of sleep before it was time to go down for his chest X-ray.

A quick glance at his chest drainage box told me we weren't getting the tube out today and every fiber in me wondered why we had to do this today if it was so obvious what the results would be.

Laying on the hard X-ray table actually does hurt him.  He has to put his arms straight over his head which is very painful for both the chest tube and his healing breast bone.  He cried the first few minutes and then resigned to the fact that I wasn't going to help him.  He stared up at me with his eyes full of tears and right there in the cardiac X-ray lab, my heart broke in a million pieces.

I wanted to pick him up and run out the front door.  Chest tube be damned, my boy had suffered enough.

But I know I can't take him home.  I can't make this all go away.  So I offered a big, huge, Sprite all to himself as a consolation prize.  Oh, Gabe was excited.  What I considered the worst reward for being brave was totally enough to stifle the tears.

So when the lab tech told me we'd have to go back to the room first to get his heart monitor hooked up first, I lost it.  Not because of the monitor, that would only take a matter of minutes, but all the sudden this is just too unfair.

My Mother Heart is hurting so bad.

One baby 1200 miles away, the other being put through the ringer.  I want to protect them and shield them and I feel like I'm unable to do either right now.

Once I started, Lord, I couldn't stop.

The poor tech thought it was her, the nurses tiptoed around our room, both making the tears come faster.  They looked at me like I was fragile and, man, I hate being fragile.

Gabe finally found the buttons that raise the bed.  He spent the morning riding up and down.

We were told at the start of all this to plan for 7-10 days in the hospital.

And here we are at 10 with no clues as to when we can go home.

We are hanging in there, staying strong, remembering that every day is one day closer, and all those other helpful sayings people keep reminding us of.  But none of that makes it any easier to do the day to day.  And when the doctors come in and sentence us to another 24 hours of waiting, it's the exact opposite of awesome.

After our dramatic early morning, I decided we'd hide in the room for awhile.

We watched some cartoons and took a much needed three hour nap.  We both woke up ready to try this day again.

And then Andrew came to visit.  Funny how him just walking in the room lifts my stress instantly.  He even brought me my favorite dinner.

I don't know what I'd do without that dude.

Medically Speaking:

He is still draining quite a bit of fluid.  Today's output was 175 ml.  We need it way lower to remove the tube.  There is no interventions to do to help it along, so we just have to wait.  And us Popes are not very good at waiting.  Based on today's output, I'm very doubtful that tomorrow will be the day it comes out.  

We did have another puke free day and he is slowly accepting his meds.  I'm mixing 4 into drinks still, but having him slowly take the other 2 by mouth.  My hope is that once he sees he isn't going to throw up, he will be more willing to take them like he used to.

We also got a pass on tomorrow morning's labs.  I guess crying like a lunatic does have it's perks.


twinkietotmom said...

I've been following your journey for quite some time now but am not good at blog commenting often. I had to today though. A little encouragement goes a long way I figure. You are one strong momma and that little boy is such a fighter. I love seeing his smiles in all of these pictures. When my girls were in the NICU and we'd take one step forward, we always ended up taking two steps back. It's so hard to play the waiting game and trust in God. It's so hard to realize this, but you'll be past this stage soon and it will all be a distant memory. Adding you to my prayer list!

Anonymous said...

Praying strength for you both today :) <3
Amy K.

Anonymous said...

I'm so sorry. This sucks, and I wish you guys didn't have to go through this. It's not fair for four year olds, and it's not fair for mamas who want to fix it but can't. I can't even begin to imagine how you mama heart is breaking. Will be praying for decreased fluid output so that you all can go home soon. Many blessings, Melissa

Traci Hutton said...

You are soooo entitled to a melt down! I can't even imagine what you have gone through, but there will be light at the end of the tunnel and you can see it shining in his eyes! Continued prayers...