February 22, 2019

CF Clinic

Azer had an early CF Clinic yesterday, followed by two games an hour away, so needless to say, he is pretty tired today!

Azer lost a few pounds since his last CF appointment, and hasn't grown enough to see a change. The dietician came in to discuss what he eats and how to add calories without disrupting his G-tube feeds too much. He is eating snacks and his appetite has been pretty good lately. He packs his own lunches and fixes his own dinner since he knows what he is craving at the time. So, the only change is to increase the Liquigen added to his night feeds for a small increase in calories. Since he has been lifting weights several times a week, and has had baseball practice nearly everyday, he has been burning quite a few more calories than usual. He has also been visibly putting on a lot of muscle. The dietician mentioned that sometimes the CFF focuses so much on the number of the BMI, without taking into consideration muscle mass and body fat. It would interesting to see the long term effect of a healthy BMI with the a measurement of muscle mass versus a higher BMI and a higher percentage of body fat.

The doctor said to not worry too much about the growth just yet, as the Endocronologist looks at the long term trend.

Azer's Fev1 looked pretty good today. His next CF appointment will be in only a few months instead of longer because of allergy season coming up. We discussed with the doctor that Azer hasn't been able to be consistent with his Periactin as sometimes he gets home too late to take it. If he takes it right before bed, he is so sleepy the next morning, he can barely function. Whenever he misses a few dosages of Periactin during allergy season, he gets so symptomatic, that he feels like he's getting a lung infection.  One of the assistant doctors suggested a prescription allergy medication that is not an anti-histamine so it shouldn't make him drowsy. Hee can also take it with or without Periactin.

About two weeks ago, Azer started to have a sinus headache. Nothing seems to touch it. One morning, during his breathing treatment, he started getting a nose bleed that lasted an hour. He tried to not blow his nose that day, but it started oozing again that night. The weird thing was after the nose bleed, he said he could smell a lot better, but that it was very sore. We let both ENT and his CF doctor know.

Update: ENT said that the nose bleed was possibly caused by winter time dryness, and to use the antibiotic ointment to keep it moist.

February 6, 2019

Baseball & Breathing Treatments

So far, Azer has been able to manage daily baseball practices in the evening, and doing his breathing treatments. We have helped him get his feed ready in the evenings to help him get to bed earlier.

Last night was his first scrimmage. We bought him a special battery powered portable nebulizer. He was able to use this on the bus on the way back home and got his nebulized medicines done. He said the nebulizer was easy to use and quiet. He didn't have time to do his vest last night, but at least he will be able to get the majority of his treatment done on late nights while away from home.

Azer did a great job staying hydrated and packed lunch and dinner for himself, and when he got home late last night, he managed to get his growth hormones and the rest of his inhaled medications done.

He is exhausted today...

As least he woke up enough to start his breathing treatment this morning lol

February 1, 2019

Update and Baseball

So, Azer's viral panel came back positive for the Coronavirus, which is basically one of thousands of cold causing viruses. His bacterial culture came back with only sensitive staph. The ENT clinic gave him some antibiotic ointment that he is to put in his nasal rinse everyday to help.

Today, he felt like his lungs just weren't recovering from this virus, so he contacted the CF clinic. The antibiotic that would cover everything he cultured from December would be Levoquin, but he doesn't want to deal with ongoing reflux from having to stop the Erythromycin. The doctor prescribed another antibiotic that will hopefully work.

On top of battling this virus, and the bacteria in his lungs for the past week, Azer has had baseball tryouts for his High School freshman team. He has been working hard to get his treatments done, his PT stretches, lifting weights, sterilize his nebulizers, and try to maintain his weight. He felt like there was no way he would make the team.

It was an emotional day when the coaches sat down with him and told him he has been selected to be one of the pitchers! Azer said he almost teared up when they told him he is inspiring and they want to keep him around. He keeps saying this whole team and the facility is like a dream come true. Anyone that knows Azer, knows he lives and breathes baseball. He has worked so hard to maintain his lung health and to keep his body strong, and it has paid off. He is so excited to spend nearly everyday on the field.

It is going to take some planning and adjustment to schedules to get his treatments done and when he has late weekend games, but we are looking into a battery powered nebulizer. He has noticed he can't eat a big meal before practices, but is starving after, so it will take some practice to figure out when and how much he can eat. Azer isn't too worried about all this however. The main thing he is anxious about his that he required to get a haircut!!!

When we had Azer's 504 meeting for High School this year, it was pretty much the same things it has been in the past: allowance for hydration and snacks, unlimited bathroom breaks, free pass to the nurses office... This year Azer attended the meeting and was able to bring up other issues that arose. We received some 504 suggestions from another family with an older child with CF that Azer really liked. We also addressed the possibility of him being hospitalized during baseball season, and wanted assurance that he wouldn't be penalized from missing practices or games do to doctor visits, or being ill. Azer is really taking charge of being an advocate for himself!