ENT

We ran over to Primary's for Kailee's visit with the ENT. She has had serious sinus problems for several years now but we decided it was time for a second opinion by a doctor that may actually know what we should do. The last ENT we saw wanted to jump into surgery, in fact so much that he had his nurse call several times telling us that we really needed to get it done quickly. The problem is that we started asking around and several people who had gone through surgery with him told us to run, not walk away from him and that he had made their problems even worse. That was the feeling I had gotten the few times we had seen him anyway. There was just something about him that made you immediately distrust him!

This trip was more informative than anything we could have hoped for! At first they said that she didn't have a bad deviated septum but she has had 2 CT scans and we knew that it was horrible. That was later confirmed with a scope. So bad that they couldn't get it through on the one side. The doctor talked a lot about what the options are, what tests need to be done. He took an extensive family history and order about 15 different blood tests and a sweat test for CF. Last year I did a lot of research online after getting Nate's CF results and learned that a lot of families that have sinus problems could have the CF gene. That would explain a lot of our family history. They don't have CF, just the gene. Recently we have started wondering about reflux. Kailee has had heartburn and the other night she woke up choking. Her dad has reflux really bad and he mentioned that maybe Kailee had the same problem. Sure enough, the doctor mentioned that for some reason, people that suffer from reflux tend to have serious sinus issues. The scope showed clearly that Kailee suffers from serious reflux. The back of her throat is scarred and red from it. It seems strange that we did not know this sooner. Of course we didn't have a clue that reflux could do such damage until Nate showed us exactly how horrible it can be! He ordered all of the blood tests that will show exactly what her immune system is doing, if it is working properly and he said we should get a lot of answers from the blood work alone. Nate passed the sweat test but the blood work showed a mutated CF gene so I am not sure what the sweat test will show with Kailee. We also have to set up an appointment for allergy testing. She is now on a 2 month round of antibiotics, Singulair, a steroid nose spray and Prevacid. After we get the allergy testing done and all of the results in we will see if we can eliminate the triggers and maybe even avoid surgery, although he feels that she may decide she wants the septum fixed anyway. I just want her healthy. It's no fun waking up with a headache every morning and not being able to breathe. Her face is in constant pain from the sinus pressure. I am so glad we went!

We also discussed Nathaniel's problems. I told him that we had yet to find a doctor that would help us figure out all of his issues! He wants us to bring him in and he said HE will work with us, will get us into the Dysphagia Clinic and we will follow up again with the GI clinic and the other doctors that we need in order to hopefully heal him and figure out how to help him eat without choking. It was such a relief to hear him say that he would help us make him better! We don't go back over until December but it is something I look forward to doing and get this little boy where he needs to be!