We gave him a full medical history on Arianna and he listened to everything I had to say. He was very open and honest with us. There is not a true test to accurately diagnose aspiration. Aspiration is when the stomach content is brought back up and goes into the lungs. This is a very serious and dangerous condition.
So his initial thoughts were this: Arianna could have a birth defect called Transesophageal Fistula.
We are also suspicious that she is refluxing since she has never slept through the night and recently started exhibiting symptoms of reflux. Now if she does not have TEF its possible she is simply aspirating from reflux.
The frustrating part of this is we can do these tests but if she does not aspirate during the time frame we do the test, which some kids dont aspirate all the time, then we won't be able to diagnose it. I'm praying that God is at work here and will allow the doctors to see what they need to see in order to diagnose whatever is going on with my baby girl.
PLAN
She needs to have several tests done in the upcoming weeks.
- Bronchoscopy - They can actually check to see if any fat or large number of macrophages are in her lungs, which would indicate the presence of food and confirm aspiration.
- Endoscopy - If she is indeed refluxing we need to see if there is any damage to figure out how to treat her. This will help in diagnosis reflux.
- NG Tube with dye - They will place an NG tube down her nose and pull it back spraying dye. If the dye sprays off into an opening then they can diagnose TEF.
- pH probe - They will place an NG tube down her nose into her stomach. She will go home with this in place for 24 hours and it will measure the level of acidity to see if she is having episodes of reflux.
- MILK Scan - She will drink a radioactive drink and then go back 24 hours later for xrays. If the radioactive material shows up in the lungs then she indeed is aspirating.
The next steps would be rather drastic on either end. If she has TEF then we will have to talk to a thoracic surgeon about going a repair. I've looked into this some but got overwhelmed so stopped.
If its not TEF but she is aspirating on her own then we can attempt to thicken her liquids and see if that helps. If it does not then she would have to have a GJ-tube (feeding tube) placed and she would not be able to eat by mouth any more.
I'm giving you guys all the fact and telling you exactly what the doctors have told me. During her appointment with the pulmonologist today I explained everything that the GI doctors told us and he is in agreement with this plan so I have to accept it and place it in God's hands.
2 comments:
Vanessa...I had no idea. We should talk.
What reflux meds is she on and tried. Isaac is on double dosage of prevacid and we finally got his under control.
and if they had to do stomach surgery, did they mention doing the fundoplication (not even adding the g-tube) just to keep everything that goes in down?
Isaac was a horrible refluxer (and still is...that's why so many meds)
You're right though, not sleeping through the night is the main symptom of reflux.
We're gi professionals here...you call or email me and we can talk.
We'll keep Ari in our prayers and hope that the tests show the most positive results.
Thank you Kathy! It means so much to me. We have never had her diagnosed with reflux so never been on meds. The only surgery they mentioned was the GJ-tube. That was given in the extreme cases. I'll have to ask them about the fundoplication if that will help apiration, if she is indeed aspirating. I'm sure you'll be hearing from me after our tests are done. Thank you for your continued support over the years.
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