Yesterday, his weight was up to 66 lbs. He's been eating very well on the steroids as always, so the weight gain is likely temporary, but I know this gives him an opportunity to have a normal appetite which is nice to see.
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 15, 2014
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.