The Slippery Slope Called Hope

We came back from our Pulmo appointment last week feeling a bit of hope.

When you are the parent of a medically fragile child, hope is often that elusive golden ring, sometimes so very close, most times beyond your wildest reach.

Dr. Pulmo directs our attention to a  x-ray taken less than a month ago.   Parker’s  heart is much smaller. His lungs so much clearer. Differences that even my layman’s eye could discern without effort.

The black and white image of my child’s lungs provide visual proof of the success of Parker’s Nissen procedure.

I review my notes.  I go over each concern one by one. We talk about the Tobi. We talk about the allergies and the asthma. We talk about how the Flovent hadn’t been properly administered because we had been sent the wrong connector for Parker’s trach.

Dr. Pulmo points out that aspirating on one’s saliva could, indeed, cause the heart to work harder.

We talk about Botox and surgery.

And the hope that addressing this aspiration could maybe, just maybe help decrease the pressures in Parker’s lungs.

On our way out we stopped for another chest x-ray. A just in case x-ray. An afternoon call from Dr. Pulmo brought the news that Parker had developed spots of atelectasis that weren’t present the month before.

A sign that Parker could be aspirating on his saliva during his sleep.

An affirmation that Parker’s vent settings need some adjusting.

Fast forward a week.

The sleeping heart rate is now making it’s way into the 90’s. The low grade fever comes and disappears without rhyme or reason. The trach is coughing out colors that begin to raise concern.  We can hear the sound of something that shouldn’t be in the upper lobe of Parker’s left lung.

And the hope begins to slip away.


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