Help me sort this out?

One of the hardest things about being the Mom of a medically fragile child (besides trying to convince your local Legislative Representative that more cuts to Medicaid Waivers will wind up killing your kid) is trying to discern the path to follow and decision to make concerning medical treatment.


Parker has gained enough weight to move up in the size of cloth diapers he wears! Now to save up the money to purchase him some more.

I thought we had a plan in place.

We would wait until the results from Friday’s FEES test were known.  If Parker showed that he was still aspirating on his spit, then we would proceed with partially pinning down his epiglottis.  We would skip the botox based on the theory that a permanent  problem required a permanent solution.


ENOUGH with the pictures, Mom

Well, on Friday we discovered Parker doesn’t really swallow.  Everything just kind of slides down his throat, directly into his lungs.  For most of us this would bring on a fit of coughing.  But not of our Hero.  He doesn’t protect his airway.

The inflammation around Parker’s voice box and epiglottis has healed.  This is good news.  This means that the Nissen was not only needed, but has been doing it’s job.

So, on to the pinning of the epiglottis, right?  This will not only protect Parker from aspirating on his saliva, but also allow him to start learning how to eat by mouth.

Not so fast.

The Pulmo disagrees.

He feels that by pinning Parker’s epiglottis partially down, his chances of ever losing the trach will also decrease.


My job is to be his advocate.  To make decisions in our Heroes best interest.

I gave up hope of Parker ever losing the trach long, long ago.

And in the grand scheme of things, a trach is not that big of a deal.

But the Pulmo believes that the results (the terrible results) from Parker’s last echo were not true and should be disregarded.

He believes that we should address the aspiration using botox and meds.  This will leave the possibility of decannulation open.

He believes that after the aspiration is addressed (along with the positive effects from the Nissen) and Parker has another heart cath, we will see improvement in his numbers.

After seeing Parker walk into this appointment holding Reed’s hand, hearing all the stuff he is now doing, the ENT now agrees that the last cath results should be thrown out.  Before he didn’t think they could have been that much off.

( I know, Chris.  I know. I’m just sharing what was said.  My hopes?  Not up.  I swear. Pinky promise.)

Pulmo points to Parker’s last x-rays where his heart is now normal in size and his lungs look better than ever.

The ENT agrees with Pulmo saying this is a reasonable first step.  If it doesn’t work, then we revisit surgery.

Except, deep down in his tippy toes, the ENT doesn’t believe this will work.

And neither do I.

I’ve heard some horror stories in regards to botox.  I also know it has the potential to backfire.



We are going in for a second opinion with another pulmo today.  I also want her take on Parker’s wonky heartrate.  I want to make sure she also feels it is due to aspiration issues.

Bottom line is that the aspiration MUST be addressed.

And I could use some new, outside of the situation, insight on the issue.

Your insight to be exact.

Cause mine is all dried up.


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