CT Scan and CF Clinic

Today, was a long CF clinic day. Azer ran first thing in the morning to clear his lungs. 

We checked into the main hospital for a CT scan.

Azer was coughing a bit while following their instructions, but it was done pretty quickly.

Azer had an OGTT (Oral Glucose Tolerance Test) today, so he had been fasting since midnight. When we first got to clinic, they drew his blood to test his fasting level. After, they gave him the sugary drink, and he had to wait two hours until the next blood draw. 

We  recently went on vacation to New Mexico. Azer took the week off from his night feeds and boluses. Over the week, he lost about 7 lbs. He managed to put most of it back on by today, but he was still a few pounds down from his last clinic visit. The dietitian was a little worried about his ability to keep his weight up, and reminded him of the importance of being responsible about eating well eat meal times. 

Azer's lung function was much higher than last time! He was almost near his baseline from last year. The doctor wants him to finish up the Ceftazadime, and then take a month off. In a month, they will see if his lung function remains stable or drops. If it drops, we may have to do alternating months on Ceftazadime for a period of time. The doctor explained that treating Steno through IV caused it to become resistant to Levofloxan, but that by inhaling the antibiotic, it attacks it more aggressively. Azer asked why the medicine has to be prepared with a needle, and can't just be in a normal vial like his other inhaled medications. The doctor explained that we are basically using the Ceftaz "off label", meaning he is inhaling what is meant to be administered through IV. 

While we were on vacation, we quickly realized how good the air there was for him. The very first day he woke up, his mucus was clear, and easy to cough out. It was an eye opener about how much the allergens in the air affect his ability to breathe. The doctor couldn't say definitively whether his allergies can damage his lungs overtime, but she told Azer they are working on getting insurance to cover an allergy shot that would hopefully make his lungs feel as good as they did in New Mexico. 

Radiology hadn't made a report on the CT scan at the time, but the doctor did show it to us. She said nothing was particularly worrying about it, but she was able to show us multiple bronchiactasis areas. This is damage to areas of the lungs that cause  thickening and scarring. 

Azer didn't get PT today since he was fasting, but his PT spent some time lovingly measuring (torturing) his form today. She noted areas that he needs to spend extra time stretching, which will ultimately help his ability to cough. 

Azer was very hungry by the time we left. We were there for more than 4 hours, so it was a long day. He had Taco Bell which is his most favorite place to eat! 

CF Clinic - Sick Visit

About two weeks ago, Azer seemed to have caught a virus. While the rest of his body recovered, it seemed like his lungs did not. In the evening, he was exhausted, after doing athletics at school and then baseball practice after that. It just felt like his breathing treatments weren't enough. He felt like his lungs were full of mucus, even though he sounded relatively clear when he coughed. His stomach has been full of mucus, which has been making him feel sick to his stomach, and definitely hasn't help his appetite.

We were waiting to see if treatments alone could clear this up, but three days ago, he ended up having shoulder pain when he took deep breaths, or coughed. We knew it was time for a clinic visit.

We were expecting low PFT's but he actually blew higher than he's been this year. He lost a few pounds, but it didn't affect his BMI too much. We saw a new doctor today, who noted that he really hasn't grown much in height this year, and hasn't grown at all since his last clinic visit. Azer will have a growth hormone stint next week and hopefully we will have some answers.

The doctor listened to him, and he sounded perfectly clear. He does have nasal drainage, so she wants us to go back to doing nasal rinses at least twice a day. Hopefully that will stop some of the mucus from ending up in his stomach and lungs.

Azer had two X-ray's today. One for his lungs, and another for his shoulder to see if the pain was possibly coming from an injury. It showed that his shoulder was fine, but that there is worsening in the areas of the lungs that have had consistent mucus plugging over the past few years. It also still shows bronchial wall thickening and bronchiectasis. If you watched this kid play baseball, you'd never believe his lungs looked like anything besides normal.

He will be on oral antibiotics for two weeks. They took a mucus sample as well has a swab from his nose to check for viruses. He ended up having a nose bleed from the swab, for some reason. If the culture shows Pseudomonas, we will be back on Tobi in addition to the oral antibiotics.

Update: The virus test came back as negative, still waiting on the results from the lung culture.