January 30, 2015

Sick...

Azer is still on steroids... a very lose dosage every other day, but still on them. His IGE levels are slowly dropping, and we are still doing labs every other week.

The day before yesterday, I noticed he might be coming down with a virus.  Last night, after his evening treatment, he had a wheezing noise in his upper right lobe that was so loud, you could hear it without a stethoscope. I called the on-call doctor who didn't have much advice to give other than to continue to do treatments or take him to the ER. He was coughing hard enough he threw up, so I figured rest would do him good. I know he didn't sleep well. Today, he had a fever, and was nauseous, but the worrying thing is his cough. It is very congested. Luckily, I don't hear much wheezing. I have been doing CPT every few hours to try to relieve him.

I don't know what exactly has changed in him, or his lungs lately. Perhaps there is still remaining inflammation from the ABPA. But this past year, whenever he's gotten sick, the wheezing can be terrible. It can be so loud that he needs a fan in his room full blast so that it covers up the noise so he can sleep. I've been getting a sense, for the first time, that Cystic Fibrosis and that horrible mucus is just so hideous. It's just horrible how quickly his lungs can get full and irritated seemingly overnight. That we can work for months and months getting him to gain several precious pounds, and one little virus can take it away in a week. While everyone else's kids get a cold and stay home for a few days and be perfectly fine, he has to be on antibiotics and steroids for weeks, sometimes months.

I just know we have to keep working hard, doing breathing treatments, CPT, running, praying... whatever it takes.

December 4, 2014

Clinic Day

When Azer was on the Voriconizole (antifungal medication) he had cracked and bleeding lips for nearly a month, and also his very first sunburn. The sensitivity to sunlight was so bad, that even sunscreen didn't help. The nurses were pleased to see his face and lips had healed completely. Where he had a sunburn on his cheeks, he now has freckles. He is on a pretty low dosage of steroids now, and his appetite is slowly going away too, unfortunately. Thankfully, he gained a few pounds.

We saw a different doctor today, but both Azer and I really enjoyed him. He explained a lot of things to Azer, and talked to him on his level. He also commented how smart Azer was when he asked him a few questions about his G-tube and what would he do if it ever fell out. 

His lung function was great, and he sounded pretty clear. His X-ray from October still showed some mucus in spots. During the time when the doctor was explaining the chest X-ray to Azer, he explained what bronchiectasis was to Azer in a way I had never heard it, and it was just a bit frightening. He brought up a CT scan that was done on Azer's lungs last year. He explained bronchiectasis is when the bronchi get damaged and floppy, and they also get holes in them. He showed us the tiny holes that you can apparently only see on the CT scan. 

Another area of concern was Azer's growth. I hadn't really paid attention to his height as much as his weight, but that is usually how the information is presented to me during clinic. The doctor pointed out to Azer that he used to be around 25th percentile in height, but now he is below 10th percentile and really tried to make a point to tell him that he has got to eat in order to grow. 

To know that his lungs have tiny holes and that he has scarring that damage that will never go away is a let down, but I know I have to trust God in this and work harder than ever at keeping his lungs clear. 

October 15, 2014

Clinic Day

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 9, 2014

Labs, labs, labs


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

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.