Kira update/GI series with Airway Question: Long..sorry

[kirafaesmom]

Today we did an upper GI with small bowel follow through because of her refluxing bile in her G tube. We are also meeting with peds surg on Wednesday to re-evaluate her for a surgical J tube to replace the combo GJ she currently has.

What a day! It took 4 1/2 hours to get the test completed. There were a few surprises. We saw significant "folds" in her upper intestines that indicated inflamation. During the first dose of barium, we saw a very distinct refluxing up into her esophagus...something she's NOT supposed to be doing with her fundo...and what we supposedly had ruled out during a month long stay; nuke med studies and ph probes supposedly ruled it out. Huh....nope. There it was clear as day. Now to the real surprise/concern. We were waiting for our next set of films to be taken when she needed to be suctioned. So, I suctioned her trach and it was VERY thick and white. Got my attention RIGHT away. Typically her secretions while on the HME are more plentiful, but thinner. Uh oh. This was about 15 minutes....maybe 20 after we saw the reflux on xray. Coincidence? This is particularly concerning because when we placed the trach, we also did the seperation. There should be NO way for anything from her stomach to get to her airway. It should be impossible for any barium to have shown up in her trach. It may be just that she HAPPENED to have extra thick secretions right after having refluxed barium. This now calls into question the integrity of her airway/seperation surgery just done in Feburary. I feel sick just thinking about the possiblities. Not to mention does this mean her fundo isn't working? We spent a month inpatient "proving" it was intact and properly wrapped. We also have the inflamation in her intestines to contend with now. And here I thought we were just doing this test to cross it off our list of things that needed done before a surgical J was considered. I have gotten so used to getting "everything looks normal" or "test results are negative"...that to be honest this caught me a little bit off guard. Oh..and the other fun part. We've been in a major heat wave. Still, I know Kira's tendency to drop her temp in airconditioning, so I bundled her up. She got REALLY pale half way through testing....checked her temp. 93.9 degrees and it's 100 outside. We got some really funny looks as we had her bundled under 3 warmed blankets and her main blanket..and hooded sweatshirt. We just kept exchanging cold blankets with warmed ones to get through the testing. Can't claim boredom with this kid!

So....my airway question is this. It occured to me that I could test her at home for airway/seperation integrity. I could add a food color or something similar as a bolus to her G tube and then if I saw that in her trach secretions I would KNOW there's a serious problem with her airway. Am I crazy for thinking about this? She's been refluxing bile into her stomach that we've been using a farrell bag to drain....but now we know some of that is being refluxed into her esophagus....and possibly into her airway. This is NOT supposed to be possible, unless she has a fissure. Any input would be great. I do have a call into her ENT to touch base.

[TommysDad]

I don't have any other input or things to think about trying that you yourself haven't already come up with. I just wanted to send great big hugs your way! You all have already been through so much I'd hate to think that you might have to have more done My heart goes out to you!

~Maggie

[Gretchen(Celia's mom)]

((((((((((((((((((hugs))))))))))))))))))

[BennyJam]

Hi Michelle--
For a long time, we were CERTAIN that Ben's fundo had come undone because he starting vomiting and showed signs of reflux. But we had an upper GI series that showed it was intact. So we were told that intact does not necessarily mean functional. Sure enough, a later milk scan showed several episodes of reflux.

Our surgeon recommended that we put blue dye in his formula for a full week and watch his tracheal secretions very closely. We didn't ever see anything from the trach. That would be an easy thing for you to try at home. Use blue and dye the formula fairly dark (you want to be able to see it even if it is diluted).

I feel for you! Sometimes (always?!) these tests open a can of worms.

Haley

[Niff]

Ugh... bad Kira! Major s Michelle. (

[lynn]

We had used blue dye also for oral feedings to make sure no aspirations were occuring.
Sorry you were caught off guard with all of the new info.

[drct1245]

Oh man Michelle... Ayden too has a fundo and has been able to throw up within about 6 months after the fundo, but at 2 1/2 his fundo was still in tact when we did a swallow study. But then we never saw the reflux you did.

I hope you can get answers!

[JWorthington]

So sorry you got such rotten news Michelle.I having no advice to add - the blue dye sounds like a good idea. Sending lots of positive vibes across the pond.

[Ainsley's Mom]

Originally Posted by kirafaesmom

So....my airway question is this. It occured to me that I could test her at home for airway/seperation integrity. I could add a food color or something similar as a bolus to her G tube and then if I saw that in her trach secretions I would KNOW there's a serious problem with her airway. Am I crazy for thinking about this?

I've done the same thing. We were suspicious that there was formula getting into her lungs so we put a bunch of green food coloring in the tube feeding and avoided any oral tastes. What do you know, nothing in the secretions but you sure could tell how long it took her to process her food. Later did the radiology thing: barium swallow study and upper GI. They confirmed what I suspected with the dye tests. I've since read on the forum that blue is the preferred color. But I think any strong color will do. The tiniest drop of colored formula will tint the secretions enough to see it. Good luck!