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!

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.

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!!

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

Physical Therapy Inpatient

Our out patient PT has been trying since last week to get Azer some physical therapy while he's here. He would definitely be able to get more mucus out if he could get up and run around. So, Tuesday Azer was evaluated by an inpatient PT, and we might be able to get to the gym some time this week.

Azer did a few minutes of exercises yesterday morning. But, in the evening, one incredible general practitioner doctor took it upon himself to get Azer some exercise. He took Azer and I to the stairs, and had Azer do push ups, jumping jacks, and then together, we all did about 10 minutes of running up the stairs. It was so much fun! Azer said his lungs felt totally normal after that. Exercise!!!!

A Sick Doctor

I think I pissed off our attending pulmonologist. She was in contact with a flu positive child yesterday.  She tried to come in our room to listen to Azer. She was a bit sweaty and obviously wasn't feeling well. I said, do you have to listen to him? He's already had the flu twice this year, and been admitted for it. Granted she was gowned and masked, but come on. He's already fighting off something that they can't identify. He doesn't need something else!!

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.

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.

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)

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!

Reason for Skin Peeling

So, the dermatology team came in to look at his skin.

They determined that this was not a reaction to the antibiotics, but was instead a skin peeling condition called keratolysis exfoliativa which can happen to people with sweaty hands, but is apparently very common with CF. Basically they said now that he has this condition, he will always have it, but they can prescribe a lotion that can help the dead skin come off faster.

They changed one of his antibiotics, Gentamicin to Tobramycin. They will continue to watch out for any hearing loss from the medication.

IPV and Possible Antibiotic Reaction

Last night, Azer noticed a spot on finger where the skin was peeling. Today, more finger had peeling skin. This afternoon, it started to appear on his toes. The doctors say it could be from the antibiotics. They will watch it to see if it gets worse.

Today, Azer tried IPV for the first time. The RT said he had great technique. It takes quite a bit of effort to use it, but Azer did great, and said his lungs felt very open after using it.

Hospitals are boring

Azer has to be hooked up to the IVs at all times, unless he wants to shower. He had a friend come visit for a while which helped to ease the bordeum. 

We were rebels and escaped outside when the rain died down. 

He says if anyone wants to text him or FB message him, that would be cool. 

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.