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.

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!

January 29, 2019


An update on his CF culture: he cultured Stenotrophomonas, which we had the option of treating if Azer wasn't feeling much better. The problem with treating it is he has to come off of one of his GI motility medications, which causes bad reflux. So, he decided it wasn't worth it to treat right now.

Today was a follow up with ENT. Azer's sense of smell has been great, and he hasn't experienced any loss until this past week, when he came down with some virus. The ENT doctor ran a virus panel to make sure this isn't caused by the flu. She scoped him, and while there weren't any visible polyps, he was pretty irritated and gunked up. They cleaned him out a bit. The doctor suggested that Azer add two packets of the salt mix to his nasal rinse, to help thin the secretions. She will ask our CF doctor about putting him on antibiotics, whether adding it to his nasal rinse routine, or orally.

I will update when I hear about the virus panel and whether he will do antibiotics or not.

December 12, 2018

CF Clinic

A few weeks ago, Azer went to the allergy clinic for a consultation. He felt like he didn't get much out of it. We mentioned the allergy shots that target IGE that his pulmonolgist said helps some CF patients. He didn't feel like it would help Azer, but did recommend restarting his nasal spray and prescribed some eye drops for eye itchiness. The allergist said that if/when Azer gets ABPA again, that there is a shot that would benefit him at that time.

At clinic, we told the pulmonogist about how the allergy clinic visit went, and she still believes that the shot would help Azer, so they will do some discussions on how to proceed.

Azer lost a little weight, but his BMI is still great. However, the doctor really wants to see him work on packing a better lunch for school, and trying to eat within the time range of his enzymes working. She also recommended that he should consistently add Liquigen to his night feeds, as this is a ready to absorb fat that is easy for his body to use. He should also consistently use Relizorb, which helps him absorb the fat from the formula all night long. She would like him to continue to gain some weight, to have a cushion for whenever he gets sick, as he can lose a lot of weight within a few days when he gets sick enough.

Azer felt like his PFT's weren't going to be great, but managed to do better than he expected. He sounded fairly clear, despite his wet sounding cough. He continues to feel sick when he takes a week off of the Periactin. The doctor suggested taking more OTC allergy medication and increasing nasal rinses during the off weeks. The Periactin has been working great for his appetite, but makes him very drowsy in the morning. The doctor suggested taking it earlier in the evening, so it would perhaps be out of his body sooner.

He has had a lot of nasal drainage over the past week, to where he describes it as feeling like a stream going down the back of his throat. The doctor looked and saw a visible polyp in one nostril. She wondered if the polyps are bad enough to be occluding his sinuses forcing the drainage down the back of his throat instead of draining out of his nose. We may be going to see ENT a bit earlier than expected.

Azer decided that Mr. Glass Head needed some protection this winter

I would like to take this opportunity to remind everyone to please get their flu shots. It not only protects you, but also protects those in our community that could potentially die from flu complications. If you need proof that it works, take a look at how many died last year, when the flu shot was much less effective than usual!