CF Clinic follow up So, this week Azer has been off of Periactin, and his allergies are in full swing. His PFT's were down today, but we weren't surprised about that. The doctor listening to him, and historically he has a lot of wheezing and asthma symptoms this time of year.
Azer has been on antibiotics for about a week. A nurse popped her head in to ask him how he was feeling today. He feels better than he did last week. I wouldn't say he is back to sounding his normal best, as he is still coughing more than normal even though his culture came back with no Steno or Aspergillus, and just MSSA. His Pulmonologist thought it over and... Read more - link to blog in bio
CF Clinic - Sick Visit So, the day after his clinic visit last week, Azer started to sound congested. It seemed to get worse through this week. His culture from last week came through, and the Steno wasn't present, but a rare growth of Aspergillus was there. Yesterday, he and I came down with a mild virus, which didn't cause many symptoms and seemed to only last a day. However, he ended up coughing hard all night long. He said at school, he was trying to breathe shallow so he didn't end up having a coughing fit in the middle of class. He was exhausted this morning, and sounded even worse.
Azer gained three pounds from last clinic visit. He really struggled and worked hard to get a good PFT today. It was a few points down from last month, and he was really frustrated about it. He has been running and feeling pretty good, but the high heat and humidity has been very rough on his allergies. Last week, we received Duplixant, a new shot that helps treat the inflammation of asthma. The first dose is two shots, and the needle was intimidating looking, but he was brave and gave both to himself. He asked the doctor how soon he might see any improvements, as he still feels like he's having lung issues due to allergies. It may take a few more dosages, but he has already stopped having sinus headaches, which the doctor said by itself may be worth it. She listened to his lungs, and said that almost every year around this time, Azer's lungs sound wheezy, but that he sounded clear today. So, she thinks the shot may be helping already. At last clinic, his culture came back clear of the Steno. If this one comes back with the Steno again, and he's not feeling that great, he will start the Ceftazadime again, and continue to cycle it every other month. Hopefully, his lungs will remain clear for the start of school!
Today, was a long CF clinic day. Azer ran first thing in the morning to clear his lungs. We checked into the main hospital for a CT scan. Azer was coughing a bit while following their instructions, but it was done pretty quickly...
Ceftazadime Azer's new inhaled antibiotic has taken a little learning. An exact amount of saline has to be withdrawn by needle and mixed with Ceftazadime powder. Then, a different amount has to be drawn from the Ceftaz vial and inhaled at the end of his breathing treatment. The doctor was right, this stuff does smell similar to cat pee. Azer says it tastes awful, and he has to use a nose clip and a mint to get through it. We all really hope this will finally kill the Steno!
CPT, The Vest and IPV It seems most people in the US who have CF ended up with the Hill-rom vest. Back when Azer was sized for a vest, the only one he was big enough for at that time was the vest by Electromed. Nothing against that particular vest (what works for one person with CF may not work for another), but it never seemed to work for him. He would never cough or bring up mucus, ever. So all these years, I have been doing manual, hand CPT. It was helpful when my husband began helping me with CPT, as it lightened the load. We invested in a massage table that could adjust in height to make it more comfortable to stand for long periods of time. We also bought plastic ramps that helped him lay at a decline for autogenic draining. Doing manual CPT is very effective for Azer, but it can be physically exhausting for us, and also sometimes it is uncomfortable for Azer, especially if he is sick and his chest and lungs are sore. We also do assisted exhales (Azer likes these). As CF creates obstructions than can be difficult to move by huff coughs alone, these help him bring up some of the bigger mucus plugs. So, last year when our RT brought up the possibility of trying out a different vest on a trial basis, I thought, what do we have to lose? Our RT put the call in, and soon a nurse came to our home and showed Azer how to use it. Within seconds of him putting on the vest and turning it on, he began to bring up mucus. We were both so surprised. After so many years of trying to get his old vest to work using every setting it had, here he was effortlessly bringing up mucus.... Link in bio for the rest of this blog post
Sick CF Clinic Visit Everything had been going great, and we thought we had the summer to relax a little after doing IV antibiotics. He felt great and sounded clear. Sunday morning, he suddenly sounded a little congested. Within hours, he spiked a fever and was suddenly coughing up brown/rust colored mucus. The CF doctor on call suggested perhaps it was transiet, but to bring him to the ER if his fever got any higher. He took some ibuprofen and the fever broke later in the evening. Yesteday, he was still coughing up some dark mucus, but seemed to feel better. Today, Azer said his legs don't hurt, but they feel uncomfortable, and he has a headache. At clinic today they did a virus swab to see if he picked up a virus somewhere. He gained several pounds from last week. His lung function was down slightly. His lung culture from last week found that the Steno is now resistant to Levofloxin. In order to treat it, he will have to be on an inhaled antibiotic for a month. The doctor warned us that the nebulized antibiotic smells like cat pee (awesome). They put in an order for a CT scan for in a few weeks. The doctor said if they tried to do a CT scan right now, radiology wouldn't be able to tell if he has fungus spores or not because of the increased mucus. It will take some time to receive the inhaled antibiotics since they have to come from a special pharmacy. Azer is currently laying in bed not feeling well...
Follow Up Admission CF Clinic Azer has been working hard this week. To try to avoid his dressing coming off from sweating, he has been riding the exercise bike everyday instead of running. We did bend the rules a little bit. He actually rode his bike while hooked up to the medicine ball IV. Today marked one full week on home IV's and a complete 14 days on IV antibiotics. Azer ran this morning to help make his lungs as clear as possible. He was disappointed to see his numbers were lower than when he was discharged. He says his lungs feel completely clear. He sounds clearer than he has in a long time. The doctor said it was probably time for a good clear out of the two bacteria he normally cultures. She explained in a little more detail about the ABPA test and his high IGE. It is possible that he does have Aspergillus growing somewhere in his lungs. She said at his next CF appointment, if his PFT's continue to fall, we will start an antifungal medication. In the mean time, she will do some more research to see if an allergy shot specifically made to lower IGE levels will help him. The good news is he put on 5 more pounds since being discharged. He has been eating well lately. Both Azer and the doctor felt like he had gotten the full benefits from the two antibiotics he has gotten these past two weeks, so he was able to have his PICC line pulled today. He can stop the Reglan and go back to taking his EES and Probiotics! Summer can finally start for him now!