GI Appointment

I am so thankful for Dr. Pratt. He is the most conservative GI doctor I have meet. We took Devin to him when he was a baby for his reflux and when we had to take Arianna back to GI we knew it would be with Dr. Pratt. So what transpired from that appointment???

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.

This is a congenital abnormality in which there is a connection between the trachea and the esophagus. Saliva and gastric secretions may be aspirated into the lungs through the abnormal opening in the trachea.


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.

Again, we are hoping that if she is indeed aspirating that she does it during the time of these tests. 

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.

Pulmonary Function Tests

 Arianna had her PFT's done a few weeks ago. The nurse, Darcie, was so impressed with how well she did. Normally they don't do this test until the kids are about 10 years old but because we are trying to figure out what is going on with her lungs we wanted to give it a try. She had to do 3 different tests. One of them is the one to the right and is very simple, like the one she does in clinic. Deep breaths and blows until her lungs are empty.

 The second test sounded like popcorn and I was suprised she wasn't scared by it. She had to hold her cheeks as the mouthpiece would cut the the airflow on and off. You can see she follows direction very well here. It also helps that Darcie is the same nurse that does her tests in clinic and she has had alot of practice with those tests already.

 The next test is in "The Box" and I was not sure how she would feel about that one. She did GREAT! She has to follow more detailed directions for this test. At one point the machine will cut off the air flow and she has to keep breathing. We did it a few times but she got it down!

 

RESULTS

She has both obstructive and restrictive asthma.  Obstructive asthma means the flow in and out of the air is impaired. Restrictive asthma means her lungs are small and do not fill up well. The elasticity is not working well. 

We continue to do the Pulmicort twice a day since this is the best treatment for now. However, this does not really answer the unknown question of why the base of her lungs look so bad on CT and xray. Also why she gets so sick and easily gets pneumonia. We are concerned that a GI component could be at play so that is our next step..