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.

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! 

April 25, 2014

Great Strides 2014!!

Hello all!

We are Team "Joggers for Azer" again this year. Please register to walk with us!

This is the walk information for this year:

Date: 05/31/2014
Check-in: 8:00am
Walk: 9:00am
Distance: 5k
Chapter: Northeast Texas - Dallas
Event Location: Vitruvian Park,
Addison, TX

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

Azer putting in a new Mic-key button

Azer has been getting better about recognizing when the balloon may be getting a little low on water. I noticed he has way less anxiety about pulling out the button if he does it himself, since only he knows how it really feels. I am really proud of him for being able to do so much on his own! 

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

Clinic day!

Yesterday, Azer had his first fasting and glucose test. I learned that they start doing these annually after they turn 10 years old. He wasn't the happiest about having to fast all night and not getting his morning feed. However, his blood sugar was completely normal fasting. They then had him drink a very sugary liquid, and then tested his blood two hours later, and again it was normal.

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!