• 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. #cysticfibrosis #cfwarrior
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    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. #cysticfibrosis #cfwarrior
  • 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. #cysticfibrosis #cfwarrior
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    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. #cysticfibrosis #cfwarrior
  • Azer will be in the Blue Caboose calendar again this year. Go to Bluecaboose.org to preorder! https://bluecaboose.org/product/2022calendar @bluecaboose4cf
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    Azer will be in the Blue Caboose calendar again this year. Go to Bluecaboose.org to preorder! https://bluecaboose.org/product/2022calendar @bluecaboose4cf
  • @cff_northtexas Great Strides day! #greatstrides
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    @cff_northtexas Great Strides day! #greatstrides
  • 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! #cysticfibrosis #cfwarrior
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    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! #cysticfibrosis #cfwarrior
  • Pft’s went up and stayed up and I got to go home after 2 weeks on inhaled tobi and keflex!😁 This picture is the score board of a variety of card games that hospital staff played with me while I was in. Thank you to the d9 staff for playing and thank you too child life for trying to be good at foosball but in the end I will always be the best🤣Thank you to the resident and medical student also! You guys were amazing at being doctors and foosball.
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    Pft’s went up and stayed up and I got to go home after 2 weeks on inhaled tobi and keflex!😁 This picture is the score board of a variety of card games that hospital staff played with me while I was in. Thank you to the d9 staff for playing and thank you too child life for trying to be good at foosball but in the end I will always be the best🤣Thank you to the resident and medical student also! You guys were amazing at being doctors and foosball.
  • 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! #cysticfibrosis #cfwarrior
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    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! #cysticfibrosis #cfwarrior
  • 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!!! #cysticfibrosis #cfwarrior #mentalhealth
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    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!!! #cysticfibrosis #cfwarrior #mentalhealth
  • Thank you @mandytruesdale for the snacks!!!
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    Thank you @mandytruesdale for the snacks!!!