August 20, 2021

Clinic Visit

Yesterday was Azer's follow up visit. As is common for any one, even without CF, Azer has struggled through the summer with keeping a schedule. Now that school started again, he's been trying to figure out how to balance school, work and CF at the same time. This is an issue for adolescents with a CF, gaining independence and managing life and CF throughout highschool and college. Unfortunately, his weight has fallen quite a bit over the last month as he's hasn't been doing his overnight feeds consistently. His lung function also fell again, so they want to see him back in a few weeks. The clinic is trying to work with him to be more consistent with everything to prevent him from a possible admission. His pulmonologist is trying to make breathing treatments easier on him by allowing him to do some of his nebulized medicines once a day, if necessary. Overall, he is still doing well with the Tobramycin, and hasn't had any fevers. 

Azer has requested several times during hospital admissions to get a new G-tube button. For whatever reason, they couldn't, or wouldn't do it. We've struggled to get them from the DME company as well. He has had the same button for well over a year. They sent him to the GI clinic after he was done with the CF clinic. They helped him put in a new button, which was unnecessarily painful due to the button being so old. The GI nurse said she will be making sure that he gets a new button sent asap. 

Azer has started to do a clinical study that studies breathing treatment adherence. It is a long term study that lasts months and keeps track of how many nebulized treatments he misses. He completes surveys from time to time throughout the study, and he even earns money for completing tasks! 

July 6, 2021

CF Clinic

Today, Azer's PFT was quite a bit higher than two weeks ago. This is despite being off of Tobramycin for several weeks due to pharmacy issues. 

He lost several pounds over the past two weeks, mostly due to not being consistent with his overnight feeds, but he plans to start getting them ready before he goes to work so he doesn't have to push himself to do it late at night. 

Azer was invited to do another study, this one being for breathing treatment compliance, if he qualifies. 

June 22, 2021

Bone Density Test and CF Clinic

Today Azer had a bone density test to test for osteoporosis that can affect people with CF. We'll find out the results later this week.

Azer has been working hard and taking a lot of shifts at work, sometimes working up to 40 hours a week. His pulmonologist is a little concerned about how many hours he's working as at times he's too tired to wake up on time and do his complete treatment. He is still working on trying to adjust his schedule and work out a routine to help remember his medications, and give himself enough time to do his breathing treatments.  

Azer has been been more vigilant about doing his overnight feeds, and gained several more pounds from last week. His lung function fell a little more from last time, but the doctor is going to continue him on Tobramycin instead of doing a month on and a month off. They did another virus test just in case, but it seems most of his coughing is coming from drainage. Two weeks ago, he did test positive for rhinovirus, and viruses are starting to pick up as more people are passing them around now. 

Since he's been working so much, he has been saving up money to pay for car insurance. He passed his driver's license test and is finally a licenced independent driver! He has been enjoying his freedom and has spent a lot of time fishing on his days off!




June 16, 2021

ENT

Today was a follow up to March's ENT appointment.

Azer was a few pounds heavier than be was at CF clinic a few weeks ago. He's been better about doing his night feeds. He hasn't been doing his nasal rinses that frequently, but the ENT doctor said there weren't any polyps and that things looked pretty good. She wasn't aware that he's been on Dupixent for a few years, and she said she wished that more kids she sees could get insurance approval to be on it, since it really helps slow the growth of polyps, even to the point of delaying the need for surgery. 

Azer has been having drainage issues, but so far his lungs have been pretty healthy. 

Since he's been on inhaled Tobramycin for about a month, she wanted to do a hearing test, just to be sure that it isn't affecting his hearing. His hearing test was perfect, thankfully. 

Results from the sweat test: the results still show that he has Cystic Fibrosis, so either the Trikafta isn't lowering his salt in his sweat enough to see a change, or perhaps it's because he was fasting that day and didn't take it that morning. 

June 3, 2021

CF Clinic and Sweat Test




For about two weeks, Azer has been experiencing symptoms of either a virus or allergies, with worsening CF symptoms. He called his doctor on Monday and she told him to take a high dose of OTC allergy pills. It has helped some, but most of his symptoms are related to his sinuses. He felt well enough to wait for a clinic visit for today.

Today Azer was 10 pounds less than he was when he was discharged from the hospital. He hasn't been able to do all of his night feeds as he his stomach has been filling up with mucus. There weren't too many changes in his routine so far. They are running a virus panel, but will likely put him in steroids for about a week. His lung function was lower than it was when he was in the hospital, but they want to see him back in two weeks to make sure it doesn't start tanking. 

Today, the clinic researcher scheduled Azer for a sweat test. This is a Trikafta study to see if people on Trikafta have a lower salt value in their sweat than before they were on Trikafta. People with CF have an abnormally high amount of salt in their sweat. Azer had this test when he was born to confirm he had CF before his mutations were found. It will be interesting to see if his salt concentration is still high. 

May 12, 2021

Discharged!

Azer came home last night! His lung function was holding steady from last week. His Tobramycin got delivered in time, and the clinic ordered a new nebulizer machine to hopefully help his treatment go a little faster. Adding Tobi to his morning and evening treatment will make his 30 minute treatments quite a bit longer. 

He got out just in time for his Ortho apparently. He should be getting is braces off by fall! 

May 8, 2021

Staying Through the Weekend




The inpatient doctors and the ID doctors were ready to send Azer home Thursday or Friday. The ID doctors had a few options other than to put in a port. They said they could send him home with the same oral antibiotic combined with inhaled Tobramycin, or with a different oral antibiotic, Minocycline. The problem with the Minocycline is it will take two weeks to find out of his type of staph is susceptible to it. 

Azer made the decision with his pulmonologist to stay through the weekend, and aim for discharge on Tuesday which will give him a full two weeks of IV treatment. He may need to stay a little bit longer past Tuesday, as they are working on insurance coverage of the Tobi. He would rather have the Tobi Podhaler instead, as it is much quicker, but it is unlikely to get the insurance to cover it. The regular inhaled Tobramycin takes 30-45 minutes via nebulizer, which he will have to do twice a day, but the added benefit is that he would be able to inhale it with a mask to target some of his sinuses where he is culturing abundent staph. 

The hospital staff and his pulmonologist noted that he seems much more like himself now that he's on the antidepressant. Azer has been enjoying Uno games with the nurses. Several will come in at a time and play. They have been keeping score on the whiteboard in the room through the two weeks, and the list is quite long now!

May 3, 2021

Improving & Mental Health

So, Thursday, Azer's PFT was about 20 points higher than it was the day he got admitted. Today, he blew the best he has in two years. He cultuted MSSA again. This is all great news, but he has been getting annoyed with the doctors as they asked to send him home on IVs, but they haven't come up with an explanation as to why this is happening over and over again, since last year. Azer is supposed to see the Infectious Disease doctors tomorrow. 

We have been noticing since last year that Azer has become increasingly irritable, and he stated that he would begin to feel numb when he was in the hospital. His psychiatrist said that adolescents, especially males, tend to exhibit depression in anger. His pulmonologist mentioned that there have been some possible cases of Trikafta making people irritable, but this isn't certain. Azer spoke with his psychiatrist who told him he would benefit from an antidepressant added to his ADHD treatment. It will take time for it to start working, but this is a good reminder that May is Mental Health Awareness month, and that CF affects families and patients in many unseen ways.

Thank you to all who have donated to the walk, GrubHub gift cards, snacks, and games!!!

April 27, 2021

PICC Line in

Azer's PICC line went in easily, but he is pretty sore. He is settling in and getting comfortable. 

He lost even more weight, about 5lbs more since his clinic visit, and the GI team is worried about it, so they will be counting his calories while he is here. He has been doing less G-tube formula, but has been eating more food, which they like, so they are trying to find the reason why he is losing weight so fast. 

He really likes ordering food while he's admitted. If you'd like to help him gain weight, he would really love some GrubHub gift cards! azerbaseball32@gmail.com

Admission

After Azer finished the antibiotics that his pulmonologist prescribed, he started to get worse. He is frustrated as he has to keep calling into work because he feels too bad to complete a shift. He has been dizzy when he stands up. His oxygen is a little lower than normal. He feels chilled everyday but hasn't had any fevers. He told clinic he needs to be admitted, as this cycle has been going on for too long. He says he will be debating the plan to get a port, as he says he isn't quitting his job, school and summer baseball and that they need to figure out another way to treat this. Hopefully they won't have trouble putting the PICC in! 

April 12, 2021

CF Clinic




About two weeks ago, Azer started to cough a lot more, and his cough was becoming more productive. He couldn't tell if it was a virus or if the antibiotics just weren't working anymore. He contacted the clinic and he tried steroids for about a week. He said they seemed to work, but the day after he finished them, he was back to feeling pretty bad. The clinic said he could try a different oral antibiotic with increased treatments or he could be admitted. He decided to try the new antibiotic. Starting last Thursday, he was feeling so bad, he came home from school and slept the rest of the day. He woke up feeling cold and had a headache and sore throat. He did a PFT at home and it was almost 30 points down from his years best. He took the weekend off of work to rest and increase treatments. His pulmonologist was really wanting to admit him Tuesday. He wanted to stay home from school to do more breathing treatments, but started to feel better later on in the week. 

At clinic Friday, his PFT was better than two weeks ago and much better than last Thursday. His doctor said he could finish out this course of antibiotics and then go back to the previous one. She said she would contact the infectious disease doctors to see if they have any advice or change of plans, since he still shows abundent MSSA in his sinuses and lungs. He has also cultured some rare growth fungus.

He lost a little more weight this time, as he has been doing less formula than the clinic recommends. At clinic, he is doing all the visits on his own now, and his doing a great job communicating with the entire staff about what works and doesn't work for him and his schedule. 


March 23, 2021

CF Clinic

Azer has continued to have a constant cough, and is most productive in the morning. He told the doctor's today that he has continual drainage from his sinuses that gets better temporarily with nasal rinses. His lungs sound perfectly clear, even though his PFTs were significantly lower than last time. The culture that his ENT took last week showed abundent growth of MSSA. His pulmonologist decided to add a week of oral steroids, add additional antibiotics to his nasal rinses, to start a steroid nasal spray and to add another steroid inhaler to his breathing treatment. They plan to meet again in two weeks if he's not feeling better.

Azer also lost another pound from last week. He has been eating a lot more since they increased his appetite stimulant, but not been doing his morning g-tube feed. This hasn't been enough to maintain his weight, so the GI team worked with him to find ways that he could add calories and extra snacks into his day, especially in-between classes at school.