Nothing can freak this Mama out more than a totally out of the blue, surprise call from Parker’s cardiologist.
I was out when he called.
And I had left my cell phone at home when he called that.
He’s wondering where we are in addressing Parker’s aspiration issues.
I’ve spoken with the nurse of PCMC’s Pulmo. She was going to find me information on the success rate of the Glottal Plasty surgeries done there as well as a parent of a child who chose this procedure.
Except she never called me back.
I talked to the head RT.
Left messages with Muntz’s nurse asking for the same specific information.
I have a deep suspicion that Parker’s ENT has pretty much written Parker off and no longer believes there is anything that can be done that will help Parker’s pulmonary hypertension.
Oh, yeah. THAT’S a warm and fuzzy feeling.
“Eh, your kid is scheduled to kick the bucket any day now……move out of the way.”
Except Parker doesn’t look or act like a kid who is circling the drain. Since his Nissen he’s been healthier than ever.
And running his Mama ragged.
I KNOW his aspiration makes his heart work harder. We see the proof on his pulse ox monitor. When his lungs aren’t inflamed his resting heart rate is anywhere from 20-50 beats a minute slower.
We know his spit goes directly into his lungs.
As does everything else he grabs and puts into his mouth.Â The kid wants to EAT.
I can’t seem to shake the feeling that Parker has fallen off the ENT’s give a damn file.
We have a surgery time scheduled for December 7th.
I can’t tell you how badly I’d like to just run away and hide.
I might come back after everything has been successfully addressed.
Is it okay to admit that I am really, really (really) tired?
And lost.Â Can’t forget lost.Â It’s the direction I know best these days.
I’ve spent the last 6 years trying to explain to people that I’m no Super Mama.
(Oh!Â But I could NEVER do all that you do with Parker!)
I’m a mentally, emotionally and spiritually tired Mom who’s goal it is to keep putting one foot in front of the other, while trying to make the best decision for my kid I possibly can.
You wouldn’t believe how often it all comes down to a prayer and my fingers crossed that I’m not the cause of more damage.
It’s the weight of the world, not on my shoulders, but in my heart.