January 14, 2018

No Pneumonia

So, the official results of Azer's X-ray came back. He doesn't have pneumonia, but he does have a small area of atelectasis. Basically he has a small area of his right lung that is collapsed. It is blocked from inflating by mucus plugging. Apparently, this is a common thing that happens in CF, and sometimes it may not be accompanied by symptoms.

Twice when he was in the hospital, he coughed up blood streaked mucus. This morning, he initially had coughed on his hand and noticed a drop of bright, red blood on his thumb. He then coughed up some pink, blood streaked mucus. I called the on-call CF doctor who said we should stop doing Hypertonic Saline, and if this doesn't resolve, we have to be readmitted...

January 12, 2018

Still Recovering from Flu

Azer's lung/shoulder pain has been off and on today. CPT this morning was relatively painless. However, the second and third breathing treatments hurt him a lot. He says his lungs are feeling less congested than yesterday.

While the strong antibiotics he's on are helping his lungs out, they are not helping his intestines. He's had strangely colored, constant watery stools. With the fear of possible C-diff, he is now on a third antibiotic, this one to treat bacteria flourish in his intestines.

By the way, if anyone knows where to get a large, 4x a day pill box (I mean large, like it has to hold many, horse pills) please let me know. I bought one off Amazon thinking it was as big as the one we have (which is falling apart to the point we're taping it closed), but it barely holds all his enzymes.

January 11, 2018

First Day Home

We've been trying to do breathing treatments every 2-3 hours. Azer can only tolerate 2 minutes at a time on his chest. CPT is causing shooting pains going to his shoulders. Today, he says that it is getting harder to breathe that yesterday, and feels like his lungs are getting worse. His lungs definitely sound much noisier than yesterday, and he is producing more. I really feel like the largish spot on his X-ray may have been pneumonia instead of just simply mucus plugging.

After sending a semi-panic stricken email to the CF clinic, he will be starting steroids for the next week. Hopefully by the end of the course of steroids, the antibiotics will really start to kick in! 

January 10, 2018


Azer had a very hard time doing a PFT test. He was refluxing and nearly vomited several times. Thankfully, the technician was very patient with him and let Azer blow when he was ready. He is, not surprisingly, about 10% lower than normal.

They switched him to a different antibiotic so that he can go back on the erythromycin. He was practically begging for it earlier.

His cough sounds pretty wet, and his x-ray showed some mucus plugging, which is probably why CPT hurts so much right now. Hopefully it will clear up soon, but we are very happy to be discharged!!

Day 3

Yesterday evening, Azer's IV really started to bother him. It flushed fine, but just running fluids through was causing pain. The doctor said as long as he drinks plenty of fluids, they could take it out and not replace it.

The most painful part of the removal is the tape. The nurse was very patient and let Azer remove it slowly himself a little at a time.

He hadn't drank much all day, so a resident doctor came in and essentially threatened Azer that if he didn't drink enough Gatorade, he wouldn't be discharged. It worked, and Azer managed to drink and hold it down.

He's had reflux issues since we've been here. It's difficult to keep track of what medications he's taking when they're given on a different schedule than we do at home. This morning I realized he hasn't been taking Erythromycin, which he takes for GI motility. Apparently, it reacts badly with the antibiotic he's taking right now. There is another antibiotic he could take, but he has experienced chronic vomiting with it. So, they are trying to figure out what antibiotic would work for the bacteria he cultures without causing an interaction with his other medications.

CPT has been painful for him, especially the upper loves, and we've only been able to do a few minutes at a time. He's been trying out a different device called PEP which is different than the Aerobika in that instead of using positive and negative airway vibrations, it only uses positive pressure to open the airways. It has been helping bring up a lot of mucus. Unfortunately, last night, his mucus had some bloody streaking in it, so we are keeping an eye on that.

The doctor ordered an X-ray to see how his lungs look. She said if we did a PFT, it would be kind of pointless because we know it would be abnormal between his refluxing and congestion. After she looks at the X-ray and figures out his medications, we might be able to be discharged today!