September 3, 2014

High Liver Enzymes

So, he's only been on the Voriconazole (antifungal medication) for about a week, but at his first weekly lab draw, they saw his liver enzymes were elevated. I am surprised it happened so quickly. So, they have lowered the dosage of Voriconazole he is taking, and have added Ursodiol to help his liver out. Within a few days of starting Voriconazole, he started complaining of blurry vision, especially when it is dark, or very bright out, but this seems to have subsided. The Prednisone (steroids) seem to be making him a bit moody, but nothing to extreme at this point. It seems to be giving him redness in the face, but luckily no other side effects.

The past few days, his cough seems to be coming back. His lungs sound pretty clear, so I'm hoping this is just temporary.

August 18, 2014

ABPA Again

Two weeks ago Azer had a blood test for ABPA which is an allergic response to aspergillus. It took a while to come back, but he tested positive for it. It was also found in his CF culture that he grew another type of fungus called Scedosporum apiospermum. This is another commonly grown fungus in CF.

He will be started on a fairly high dosage of steroids and an antifungal medication. Because the antifungal medication can cause liver damage, I have to take him to have a blood test every week to make sure his levels are within a safe range. 

I am glad that at this point he can be treated without being admitted and orally!

July 30, 2014

Clinic Day

About 2 weeks before our CF appointment, Azer started to get a congested cough. No matter how much CPT I did on him, I just couldn't get all the mucus out (I always do CPT in addition to the Vest when he's sick. He has never coughed anything out during the Vest). With the stethoscope, he had diminished airflow in the lower lobes. So, the doctor prescribed the antibiotic Cipro for 14 days. Within a few days, his cough sounded dry again.

His oxygen was 100%. On his PFT, the highest he got was 93% Fev1 but the respiratory technician said that she could see he had a mucus plug. The doctor wants us to do Pulmozyme and Hyper-Sal twice a day instead of just once a day to clear up any remaining mucus. He hasn't gained any weight, but the doctor said that it tends to be hard to gain weight in the summer, especially how active he is.

It was time for annual X-rays and labs!

This machine was set up in the room where they drew his blood (it wasn't set up for him). I haven't seen it in 10 years. It is used to collect sweat to diagnose Cystic Fibrosis using electrodes.

May 31, 2014

CF Walk

What a time! We raised $335!

Azer and another boy from his baseball team were the the first people over the finish line.

Thank you to all who donated and thank you for those who came today!

May 15, 2014

CF Clinic

Well, he's been feeling pretty good the past 3 months. No real increases of cough. His oxygen was excellent, as always. He gained a few pounds. I've been grateful that he has had a fairly good appetite most days. He has been having floaty, fatty stools lately, which had the doctor and dietitian a bit puzzled. He is on a pretty high dosage of enzymes right now. The only way they could increase the dosage was if he gained more weight. They try to keep the enzyme dosage under a certain limit because if he was on a too high dose for too long, it could cause erosion of the intestinal wall. 

His PFT's were down to 87% Fev1 today. They are running a culture to see if he is growing anything that needs to be treated. The main reason they think his lung function is down is due to allergies. If allergies can affect a normal person's eyes, nose, ears and throat, they most certainly can affect the lungs of a person with CF!   

He got a new Acapella today! It seems to work quite effectively as he was coughing up all kinds of lovely things, and guess who got to hold the specimen cup ;-). The Acapella works by creating positive air pressure in the lungs to force open the alveoli which helps push the mucus into the bigger airways where it can be coughed out. In fact, he was still coughing up mucus this evening!  

The doctor noted how clean his G-tube stoma is. Azer said he keeps it clean, and I muttered how he cleans his stoma better than his room!
It is 15 days until the Great Strides CF walk! We have raised $80 so far! If you are interested in donating or walking with us, just click here!