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.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Will say prayers and hold onto hope for you.

  2. Praying for Parker.

  3. Kristie says:

    Oh no………I am soooo unbelievably sorry to hear of this hopefully minor set back!!! :( My heart reaches out to you and your family during this time…….I will continue to pray for you, your family, and that sweet little man, Parker!!! (((hugs)))

  4. We are still pulling out a ton of crud from Parker’s trach today. We are hoping that maybe, maybe this means the new settings on his vent are opening up his lungs enough to dredge up crud stuck within.

    Whether this is true or not, it makes us feel a little better. :)

  5. Crap. My heart is aching for you guys. Miracles are always happening all the time. Praying that you get some good results and some miracles sent your way. Hugs. Common crud…get outta there!!!

  6. Tammy, do you know Monica (Tabitha’s mom)? Tabitha went through the Botox surgery for secretions, and I thought it might help to chat with her about it. http://monicathemighty.blogspot.com

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