December 4, 2014
October 15, 2014
Because he is finally responding well to the steroids and anti-fungal medication, we can stop the Voriconizole next week! Also, next week we will lower the steroids further. They will check is IGE levels next week to see if we can lower the steroids or stop them.
The Voriconizole causes photo sensitivity and he has had a sunburn on his face, and his lips have been cracked ever since we started it. We are looking forward to seeing that heal.
He got a 99% Fev1 on his PFT's as well, and his lungs sounded great. We did an X-ray just to see how they look after all this hard work. I expect them to look great.
There is a new Pulmonologist added to the team, and after three weeks of seeing her name on prescriptions and lab orders, we finally got to meet her. She is fantastic and a great addition. We are blessed to have such a great team.
October 9, 2014
After going to Dallas Childrens every... single... week to get his blood drawn, we have been given the word that we can start to lower his steroid dosage! It is starting to feel like we're finally making progress after fighting Aspergillus for months. His IGE levels started lowering about 3 weeks ago, which shows that the anti-fungal is doing what it is supposed to. His liver enzymes have remained stable, which is a blessing.
September 3, 2014
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
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
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.
May 31, 2014
May 15, 2014
April 25, 2014
We are Team "Joggers for Azer" again this year. Please register to walk with us!
This is the walk information for this year:
Chapter: Northeast Texas - Dallas
Event Location: Vitruvian Park,
The walk is held at a different place this year, so a change of scenery sounds nice!
Here is the link for our page.
Look forward to seeing you there!
March 6, 2014
Here is a picture of the Mic-key button with the balloon filled with water. That is what holds the button inside the stomach wall. We usually replace the button about every 6 months.
February 14, 2014
He was down about two pounds yesterday. The dietitian was kind of concerned, but I really think it had something to do with not getting his night and morning feed. He tends to hold a lot of liquid in his stomach. On the plus side, as of late, he actually has had an appetite. That is going from having nearly no appetite, ever. The only exception to that is when he is on Prednisone, which nobody wants.
He scored 94% Fev1 on his PFT's yesterday. He had great air intake, despite having a mildly wet cough. The doctor said he sounded very clear. As usual, the doctor said he has the cleanest G-tube stoma he has ever seen. That's always funny because he keeps his button so clean, but it is a constant struggle to keep his room clean. Boys are strange I guess!
After clinic, we had our obligatory lunch together. Azer chose Subway. The kid ate nearly an entire foot long meatball sub. Very impressive!
After which, he was very energetic. So, yay for a good clinic day!