T minus three days

These past couple days have been an emotional roller coaster.
Tuesday morning the doctors decided it was the day to try and extubate Peanut. The room had an air of excitement and optimism. "He's done so great on the CPAP", "did wonderfully on trials", he should do fine with extubation right?
That afternoon, they took the tube out of his throat and put the CPAP tube in his nose.
He barely lasted a half hour. He was breathing very heavily, turning color, and becoming very stressed. I showed up around 12:30 to see how he was doing. I was sucking on a Coke icee from Sheetz as I strolled through the door.
I could feel the disappointment in the air. I looked at the doctor and he just shook his head. My shoulders fell and my good mood vanished.

Wednesdays rounds were short. "Failed at extubation", "continue management and trials". We left feeling like we had hit a brick wall.
"What do we do now?"

Thursday was worse. "Failed overnight, had to raise vent pressure", "disappointed". They had to give the baby another blood transfusion due to low numbers. "We don't know why he's worse". They said that they didn't want to bother him much today, just let him rest.
"I'm worried about him" the doctor tells me.
That was all it took to make me break. I listened as I stared at the floor, clenching my jaw, trying not to cry. I just nodded, said thanks, and watched them leave. I grabbed my stuff and headed out of the PICU keeping my head down. I made it across the parking lot without any tears, climbed the stairs to the McDonald house and signed in.
"Hey! How are you doing?" Crystal asks me.
"I'm fine." I answer not looking at her.
"How's the baby?" she asks with a smile.
I just walk away, I can't do it. I can't answer her. I can't hold back the tears anymore. I'm half crying, half hyperventilating as I walk as fast as I can to my room. I close the door, throw my bag on the bed, and turn up the AC. I'm pacing around in a circle, trying to slow my breathing, holding my chest.
"Oh God help me" I pray. "Help my son."
I crawl into bed, hoping to fall asleep and not think about what could happen next.
Then my phone rings.
Seriously? After answering, I lay down and look out the window. I see the sun shining, gorgeous blue skies, and think "Okay, thats enough moping." I had my moment of weakness, of hopelessness and fear. But now I have to get it together. I can't take care of my son if I'm an emotional wreck. I need something to do.
So I decide to go for a walk. I drive down to the river trail and go for a three mile walk/jog to clear my head. I enjoy the sunshine and scenery as I jam out to some good old Smash Mouth.

Feeling very refreshed and, for the first time, kind of awesome; I go back to check on the baby. He's sleeping and stable so I go track down his doctor. I knock on the office door and peek my head in.
"Hey, its your favorite mom!"
I ask if they have heard anything from Dr. G, the surgeon.
"Surgery, Monday" Thats all they know.
I get kind of excited. Finally! A plan, a decision, a timeline!
Dr. W tells me it will be rough. "He will be very sick afterwards."
"Happy thoughts" I say with a smile, "You're going to make me cry."
Which saying it, of course, makes me tear up.
He quickly stands up to give me a hug.
"Hey, it will be okay. I believe he'll make it through."
I can only nod. "I don't want it all to be for nothing."
"He'll make it" he tells me, as he hands me a tissue.
I smile through the tears, "I hope so".

So today during rounds, the docs don't change anything. They want him to be comfortable and rested before the big day. I talk to one of his five cardiologists and he tells me that the surgeon has decided to operate on the right side of his heart.
I ask a few questions, get a few answers but the surgeon is who I really want to talk to.
I'm on the phone when he walks in.
"Gotta go! Call you back!"
He sits down, dressed in light blue scrubs, shoes still covered in booties from surgery.
He gets right down to the nitty gritty.
"His chances of not making are less then 50%, but...", here he points to emphasize his point, "at least 25%".
I nod.
"The doctors tried every trick they had to get him off the vent and we see that its not going to happen. We had to exhaust all other options before we could justify taking this kind of risk with this surgery."
I nod again, agreeing. He goes on to explain a few more details about what he's going to do, and what he hopes will happen.
Let me explain something about Dr. G. It's like listening to God himself (not trying to get struck by lightning here) but the words that are coming out of his mouth are SO important, you don't want to miss a thing. I'm almost straining to try and catch everything he is saying so I don't forget. I'm quickly jotting words down so I can repeat them to my husband. This man will have his hands inside my baby's heart within the next couple days; I do not want to misunderstand or misinterpret anything he says.

Knowing that they will finally be doing something is so relieving, but at the same time nerve wracking. This surgery will be much harder on him then his first. He will be very sick for awhile afterwards. His chest will most likely be left open again in case it swells. We will be moved back into the "heart room" in the PICU. It has the OR lights in case they have to do a procedure on his heart; that way they don't have to take him out of the room.
When I asked if recovery will be at least six weeks again, the doctor only gave me a sad smile and said "If you're lucky."

So here we go folks. Fingers crossed, prayers sent: I am ready.

1 comment:

Anonymous said...

I am not quite sure how long ago or even how I found your blog, but I have been reading for a while. I wanted to let you and your family know that I will be praying Monday for your sweet boy!! I am a heart mom also, our daughter Madison was born with a Coarctation of the Aorta, or a narrowing in her aorta, she had corrective surgery at 7 weeks old. Her heart is the least of our problems at this point, but that is another story for another day.

We are praying for you guys and Corbin!!

Jess the mom to lots :o)

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