July 9, 2018

Got the PICC line!

They were able to put in a PICC line without sedation. They also did a chest X-ray.




He will have three different antibiotics running through it. Several can affect the kidneys so they have to test the levels periodically. Another medication is in the same family as tobramycin and could affect his hearing. They have to use these medications as he has vomiting with an antibiotic he used to be fine with. Another possible medication that could have worked could cause an adverse side effect with one of his GI motility medications.

He will also be starting an inhaled steroid while he's here.

So, here's to hoping that they help his lungs feel better soon!

CF Clinic and Admission

Today was a follow up visit for after our vacation. We knew coming in that we might be facing a hospitalization.

Azer gained weight from last visit. He's been very hungry from being on Periactin and Prednisone at the same time.

Azer did three treatments yesterday and ran for 30 minutes today to try to get his lungs as clear as possible for PFT's today.



His first try ended up 20 points below his normal. After 8 tries, he was still lower than last week. His culture from last week only came back with MSSA, he's been on oral antibiotics for two weeks, and steroids for over a week, and it feels like nothing is working. The doctor listened to him, and said his lungs sounded clear, oddly enough. His cough sounds productive and irritated. He said when he ran this morning, he had lung pain. He says his lungs feel full, like the mucus is stuck.

The doctor said we can start IV antibiotics and see if he feels better after a few days. If not, he will get a bronchoscopy, which would help them get a culture from deeper in his lungs. She said about 70% of the time, a bronchoscopy causes a fever. The stain for mycrobacterium came back negative, but the doctor said sometimes the stain can be negative, but the culture could come back positive. If it is mycrobacterium, it could be a hospitalization up to three months. 😶 It is frustrating to not know what his causing his lung function to decline when he is doing what he can to improve.




They will try to put in a PICC line in today without sedation. Previously, he has had light sedation. The technician came in to check his veins and put numbing medicine on his arms.


The antibiotics he will be taking are Ceftazidime, Nafcillin, and Gentamicin. He started inhaling Pulmicort with his breathing treatments.