July 30, 2018

Admission Follow Up

Azer blew a few points higher on his PFT than he did the day he got discharged. He still felt like it was harder that it should have been to get there. The doctor felt like he could still get back to his base line if the weather and his allergies were optimal. The great news is that he feels like his lungs are very clear, and he has been running in the mornings and has not been out of breath. So we will try to make the most of the rest of summer before high school starts!!

Azer also felt that dermatology was wrong about his skin peeling. He said that as soon as they had switching him from Gentamicin to Tobramycin, the peeling stopped progressing. The doctor said that it was a possibility it was from the antibiotic, but that the reaction he had was just undocumented.

He ate very well while in the hospital. His appetite hasn't been great since getting home. He has had an upset stomach and diarrhea for the past week. The good news (sort of) is that I also ended up with these symptoms, so it may be a virus.

While the IPV did great for him in the hospital, and we are persuing getting one for home use, he felt like getting back home and using his vest helping clear out some mucus that wasn't moving otherwise. Of course, him getting back to running has helped him feel 100% back to normal!

July 23, 2018

PICC Line Out!

This guy is so brave, y'all...



Discharge and the Plan

Azer using a resistance band the wrong way 😆


Yesterday, Azer ran around outside for a while. He said he felt like he shouldn't have gotten so out of breath so fast.

He had a repeat X-ray last night, which looked unchanged from two weeks ago.

Today, it was refreshing to see our main Pulmonologist. Azer told her how he felt, I told her my concerns. We have three options: 1. Stay in another week on the same antibiotics, 2. Go home with IV antibiotics, 3. Take out PICC line and see if his lung function goes down over the week.

Going home today sounds like what we all want regardless of what his PFTs look like today. Azer and I both wonder if there is something growing deep in his lungs that they aren't picking up on the culture. So, being off antibiotics for a week or so will give time to see if the bacteria in his lungs will come back. If in a week's time, his lung function has dropped, we know there is something there. If it has remained stable or gotten better, it is likely the air quality and allergens that are giving him problems.

July 20, 2018

Going Home Monday

Azer's PFT results were the same as Monday, so not as bad as yesterday. The doctor is comfortable with sending him home Monday on maintenance antibiotics. The fear? It took him 8 hard tries to reach his goal today. It shouldn't be that hard for him to get there after being on harsh IV antibiotics for two full weeks. He's been running, doing stairs and PT. His cough sounds clear, but according to the test, he's not breathing in as deep as he's been able to before.

Another Dressing Change


So, the doctor said if his lung function goes down over the next few weeks, that we will do a bronchoscopy to find out what else is lingering in there. At least we will get a few weeks of summer swimming first!!

July 19, 2018

A Little Discouraged

Azer says his lungs feel nearly 100% better. He did a PFT today, and since he's been here, each one has been getting better. Today, it was 5 points down. He tried 6 times to get it higher. The doctor looked at the results and said compared to previous times, the numbers are accurate.

She said we can retry the PFT tomorrow to see if it was a fluke. If they aren't better, they will do a bronchoscopy. She said often, a bronchoscopy can make a person's lungs worse for about two weeks, (which means an even longer hospital stay) but it might give them a better culture of what else might be in his lungs. He might be able to do home IV's at that point.

Azer isn't used to long hospitalizations, but here are some fun things we've done.

Playing foosball

Kendra Scott Jewelry

Assembled and painted a wooden dinosaur

Playing games with the Red 🎈 Network

Pretty much the entire time we've been here, Azer has been requesting the most silly, unusual songs on the Red 🎈 Network. Most of the songs are by Parry Grip. If you've never heard of them before, Azer says you should probably take a listen. You can thank him later.


He requested "It's Raining Tacos" so many times, I'm fairly certain everyone here is very familiar with it now.



We ran this IV pump's battery down so low, it died


Playing games

Snapchat filters lol