June 17, 2020


Azer had a quick televisit with his Pulmonologist this week, just to update her on how he is. Azer has been taking an OTC nasal decongestant, which has been helping the cough somewhat. It also seems to be causing some ear pain, and headaches in the evening, which are helped with his sinus rinses. The doctor said that because the cough is worse in the morning, and gets better throughout the day, this sounds like it may be a sinus problem. He has been outside a lot more, so she told him he could try an additional allergy pill in the morning. The lung burning seems to be resolved, so it likely was some inflammation in the chest wall caused by excessive coughing. Azer had an orthodontist appointment about a week after having his wisdom teeth out, so his teeth have been very sore, and he's also had very little appetite.

His ENT visit went fairly quickly today. Azer told her everything that they've tried to help his cough. He let her know that if this isn't a sinus problem, the only other option going forward is a bronchoscopy.

She looked in his nose. There is some inflammation, as there always is, and some visible polyps. She wants to get a CT scan done, but right now, it would be difficult to get a clear picture of the polyps among all the inflammation. She is giving Azer about a month of antibiotics, and is adding another steroid ointment to his nasal rinse on top of the pulmicort and inhaled pulmozyme. She is also adding an antihistamine spray with his usual Flonase. After three weeks of this, he will have a CT scan done, and she will assess if things have gotten any better. If not, Azer might be having another polyp removal surgery. The ENT doctor said she would discuss with the pulmonologist if it would be possible to schedule a bronchoscopy during the same surgery.

June 2, 2020

Clinic Visit

The CF doctor felt that an in person visit was needed at this point, as Azer's cough hasn't gone away. He felt like the sinus rinses improved the cough somewhat. He is unsure if adding the EES has done that much, other than possibly stopping the fevers. Azer wants to stop the EES and go back to taking the Trikafta normally, as he feels like the Trikafta isn't as effective this way.

Last week, Azer had his wisdom teeth removed, which went very well, and he recovered quickly, and he was able to do PFT's today. His lung function was really good today, for how he sounded. The doctor heard some crackling in one lung, but it moved after he coughed.

When Azer had his teeth removed, he started a high dose of ibuprofen for pain, and he said his lungs haven't burned while on it. The doctor felt like this may indicate some irritation of the chest bones, and less likely due to reflux. She said he should discontinue the ibuprofen as it is hard on the stomach and kidneys. Since his cough has improved with the steroids added to his nasal rinses, she wants him to continue with this and she is making an appointment for him to see the ENT doctor. He had a chest X-ray today, and they are running a normal CF culture, and also an additional one to test for microbacterium, just in case.

The doctor mentioned that if the fevers continued, he may need to come in for IV's, but Azer has been frustrated that they are still reaching for possibilities of what this could be. He said he's been on oral and inhaled antibiotics, oral and inhaled steroids, and neither of those have helped at all. The doctor agreed he's been coughing for too long, and that if the ENT can't find any cause, and the fevers come back, that it may be time for a bronchoscopy. She would want to do this inpatient, as usually this can lower lung function temporarily. Due to Covid-19, he would have to be tested in another portion of the hospital first, before being allowed to check in normally. Hopefully, we have answers before this becomes necessary!