On Egos, Surgeons, and those trying to keep a kid alive.

Dear Surgeon,

I brought Parker in to you on Thursday over concerns that he can so easily throw up over his Nissen.  No gagging needed.   Because of this I have had worries that Parker could also be refluxing over his Nissen.

During our last appointment with the  GI doctor due to three months of non-stop poop, we mentioned Parker’s ability to throw up over his Nissen without one ounce of effort.  Not even a gag.   GI doctor was ADAMANT that if Parker can throw up so easily over his Nissen then his chances of refluxing over it are also high, and the Nissen then must be tightened. His theory being that a kid who aspirates on his own spit is also going to aspirate on his own vomit.

That was from the GI……NOT ME.

You would hear nothing against your Nissen.  You said you had to have solid proof that Parker was refluxing over his Nissen and suggested a BRAVO procedure.  I agreed, but expressed my concerns that other PH probes and upper GIs and scopes all showed that Parker didn’t reflux.

That is when you suggested that you could disconnect Parker’s stomach from his esophagus  and THAT would ensure Parker could never throw up again.

Ummm….maybe a tad bit over the top, Big Guy?

Everything we put down Parker’s tube is going to be colored blue. If we see that blue coloring in his trach tube then we have proof positive that he is refluxing. Kinda old school….but it works. We’ll also have the BRAVO procedure done.

It wasn’t until we were seeing reflux in Parker’s mouth every single morning that ANYONE ever was willing to take notice, and suddenly we realized that when Parker’s g-tube was placed he should have had a Nissen placed as well.  I asked about that, remember?  I was told that the new and improved thinking is that Nissens and g-tubes don’t always go together.

Unless you’re Parker.  Parker needed both the Nissen and the g-tube.  Something we discovered a few years too late.

You refer to Parker as being complicated.  I refer to him as being the reason Murphy’s Law was invented.

I’ve been right FAR more times than I’ve been wrong, that alone should buy me some respect.

Yes, you took harder classes in college than I did.  Your brilliance outshines mine.  I can’t find the doors to the operating room without help, while you perform miracles on the other side them.

Yet, even with all of that…..

NONE of it makes you smarter than I am when it comes to Parker.  I am the expert on my kid.  You really should listen to my concerns with respect considering the track record so far.

How about working with me and helping me keep this kid of mine alive.

How about (GASP!) collaborating with the GI doctor and the ENT?

I have trusted you many times with my child’s life.   Is it really that hard to trust me when I have a concern?  A snarky surgeon isn’t all that professional.

About Tammy and Parker

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

Comments

  1. I just have to laugh at this post, because I just told the GI the other day that I know EVERY, SINGLE, OUNCE of Jaxson. I know if he has put on an ounce. I know if his stomach is just a centimeter bigger. Trust me, what I say, is what goes, because I know what is going on. I don’t care how big your degree is!
    When Jax first had his g tube, they wouldn’t do a nissen either. Said the PH probe showed he wasn’t refluxing, just the food going down. I had to remind them that no food went down, he was fed through an NG tube! Upper GI’s never show Jax is refluxing either. I can’t get our docs to fix Jax nissen either! We’ve jacked up his reflux meds like crazy, and given him stuff to get secretions down, and pray he doesn’t have a big aspiration episodes that leaves me saying “told you so!”
    Lacey and Jax recently posted..A little reminderMy Profile

  2. Oy, sorry. He is the best option or can you find someone new? I don't necessarily need a warm bedside manner but not listening… that's unforgivable.

Speak Your Mind

*

CommentLuv badge