July 17, 2018

The Plan So Far

So Azer and I spoke with the attending pulmonologist. He says his lungs still feel full and is still having more of a productive cough than he expects to have at this point. She told him that his PFTs are still going up, and he sounded better while performing the test, and isn't bringing up as much mucus as before.



 She said that this infection might just be harder to fight but that it doesn't necessarily mean that the next time it will be this hard. We are used to finishing the course of IV antibiotics at home. She said the IV antibiotics given in the hospital are given more frequent and are stronger, and she'd rather him finish a full 14 days of aggressive therapy. She said if he still feels bad after Monday, they will regroup and try something else. If he feels better by then, we can go home with oral antibiotics.



The skin peeling has slowed down, but in some areas, it has continued. It is annoying him, but otherwise it isn't harmful.



Overall, he just wants to go back to having a normal summer, spending time with his friends and go swimming.

Sleep Study

A few months ago, Azer started using a Fitbit. Since he can track his sleep with it, he was noticing that he is far more restless when he sleeps than he should be. He also has been noticing that he will have periods of sleeping with his eyes open during the day. Since sleep apnea can happen as CF progresses, we decided to try to schedule a sleep study while he was inpatient.

They were able to schedule it for Sunday night. They came in, attached sensors and electrodes to his head, nose, arms and legs. The results came back and he does not have sleep apnea, but he sleeps so restless, he does not obtain REM sleep. I haven't heard if there is any help for this, but at least we know he is breathing well while he sleeps.

July 15, 2018

Changes Needed

So, it's nearly been 7 days since Azer's been on three IV antibiotics. Azer was feeling discouraged last night. Even though his lung function test Thursday was up, he feels like his lungs haven't gotten better and says they feel full and irritated. He was worried that if he went home, his lungs would just nose dive.

 He did a great job this morning explaining to his Pulmonologist how he felt. Azer said that using the IPV has done a great job clearing the mucus out, and the bronciodilator is opening his lungs, but feels that the antibiotics he's on are not killing whatever is making his lungs sick. The doctor agreed with Azer and told him that the PFT is just one indicator in how his lungs are doing, and they really take into consideration how he feels.

So, the staff will present the data from this week to Azer's main pulmonologist and she may change his antibiotics, or he may have a bronchoscopy this week. Either way, it's not looking like he will go home quite as soon as we had hoped.

July 14, 2018

Worsening skin





Dermatology was contacted again. They said that this was not unusual, but they can't explain why it started nor when it will stop or how far it will progress. They are not concerned because it is just affecting the top layers of skin. They suggested that he puts vaseline on and wear socks and gloves. (I will not be offended if everyone replies to this post with "it puts the lotion on its skin" memes)

July 13, 2018

Dressing change and Frisco Rough Riders

It would be normal to think inserting a long term IV would be painful, but dressing changes are very painful. Azer had to have his dressing changed a few days earlier than normal as it was coming off. This can be dangerous as it can lead to bacteria entering the blood stream right near the heart. 

Child life surprised Azer today. A few players from the Frisco Rough Riders were here, and came to visit him. He was so excited! They talked baseball, about him being a southpaw, and watching him play an MLB game on the Xbox. Azer's eyes lit up when one of the players mentioned that he met Barcelona Colin (a Texas Rangers pitcher). It was a wonderful experience for him!