The Current Plan

Azer has wrestled with the decision over the weekend of what to do, whether to stay for another week on IVs or try the EES again.

His PFT was the same as last Wednesday. His airflow was good and he had very little coughing during the test. He was disappointed with the number and felt like it should be better.

One of the fellow doctors that works with his main pulmonologist came in and Azer told her that he feels a lot better, but not completely at his best, and that he just wasn't sure what to do. He mentioned that before Trikafta, he seemed to do well when he was on inhaled Ceftaz, and that his lung function would drop on the off months. She said that in theory, he has been sufficiently treated for whatever has made him sick, but that a little more time might help. The plan is to switch him back to an IV antibiotic that covers MSSA the best, and to start inhaled Ceftaz. If his PFTs are higher on Thursday, we'll know it's working, and he can go home. If he starts to get sick again, he can start the EES and Trikafta on a modified schedule to see if he is aspirating. 

CF Clinic

A few weeks ago, Azer went to the allergy clinic for a consultation. He felt like he didn't get much out of it. We mentioned the allergy shots that target IGE that his pulmonolgist said helps some CF patients. He didn't feel like it would help Azer, but did recommend restarting his nasal spray and prescribed some eye drops for eye itchiness. The allergist said that if/when Azer gets ABPA again, that there is a shot that would benefit him at that time.

At clinic, we told the pulmonogist about how the allergy clinic visit went, and she still believes that the shot would help Azer, so they will do some discussions on how to proceed.

Azer lost a little weight, but his BMI is still great. However, the doctor really wants to see him work on packing a better lunch for school, and trying to eat within the time range of his enzymes working. She also recommended that he should consistently add Liquigen to his night feeds, as this is a ready to absorb fat that is easy for his body to use. He should also consistently use Relizorb, which helps him absorb the fat from the formula all night long. She would like him to continue to gain some weight, to have a cushion for whenever he gets sick, as he can lose a lot of weight within a few days when he gets sick enough.

Azer felt like his PFT's weren't going to be great, but managed to do better than he expected. He sounded fairly clear, despite his wet sounding cough. He continues to feel sick when he takes a week off of the Periactin. The doctor suggested taking more OTC allergy medication and increasing nasal rinses during the off weeks. The Periactin has been working great for his appetite, but makes him very drowsy in the morning. The doctor suggested taking it earlier in the evening, so it would perhaps be out of his body sooner.

He has had a lot of nasal drainage over the past week, to where he describes it as feeling like a stream going down the back of his throat. The doctor looked and saw a visible polyp in one nostril. She wondered if the polyps are bad enough to be occluding his sinuses forcing the drainage down the back of his throat instead of draining out of his nose. We may be going to see ENT a bit earlier than expected.

Azer decided that Mr. Glass Head needed some protection this winter

I would like to take this opportunity to remind everyone to please get their flu shots. It not only protects you, but also protects those in our community that could potentially die from flu complications. If you need proof that it works, take a look at how many died last year, when the flu shot was much less effective than usual!