May 29, 2016

Thank you!!!

Dear Donors and walkers for “Joggers for Azer”,

Thank you so much for what you have done. This is the first time ever that we have raised over $600 and it's all thanks to all of you who contributed. Thank You to everybody who showed up to the 2016 CF walk this year to support me and many other people with this rare and genetic disease. We could not have done it without everybody's help. Thank you so much for all you support and help.

Sincerely, Azer Russell

May 26, 2016

Endocrinology Appointment and Results

The endocrinology appointment went pretty fast. We talked about some of the concerns over him gaining weight, but not growing in height. We reviewed the GI medications he's on. I was also able to ask about the bone density test he had a few months ago. It was on the lower end in the range of acceptable. She did a physical exam, and concluded that based on her observation, his hormones are likely normal. Just in case, we were sent down for X-rays and labs. 

She tested for many different hormones that help growth and puberty.

Our number or "place in line" at labs. Azer noted it was his lucky number. 

In X-ray, he had a Bone Age scan, which looks at how his bone age matches up with his actual age. The result was it was about two deviations from his actual age, which apparently is still within the normal range. 

All of his hormones came back as normal for his age and stage in puberty. She noted where he was on the growth chart, and it looks like his height is finally starting to creep upwards. She said if he continues to follow this trend, he should reach his genetic height without the need for growth hormones. 

They also did a random glucose test. In the past, his fasting glucose has been normal, but his random glucose tests have been a little high. So, for the next month, they want us to test his blood sugar twice a day, twice a week. This seems so sudden. Luckily, I was able to go back to the clinic and get hands on instructions from one of the awesome nurses there. They told me to let them know right away if his blood sugar is too high. I am hoping he doesn't have CFRD, but if he does, I am grateful that we have the opportunity to treat it soon. At the same time, every time something new is added, it always feels like a huge burden for a while until we get used to it. So, I am still hoping this is only for a month!

May 13, 2016

G-button Infection

So, Azer's lung culture came back as abundant Staph that grew two colonies. Despite this and the not so great chest X-ray, our pulmonologist wants to hold off on antibiotics since Staph is so common, and if we over-treat it, it could become resistant to antibiotics eventually.

Despite using gauze around his G-button and keeping his stoma very clean, it has continued to be wet, red, warm, painful, and leak pus. The GI doctor has concluded that it is infected and has prescribed antibiotics to treat it. They also are trying to get a pharmacy to send us some special dressing that will promote healing. We don't know why his stoma got infected, but apparently it's not that uncommon.

Sorry for the gross picture, but when I searched for a mildly infected G-tube stoma, I couldn't find a whole lot. The one I did find was very helpful. Usually, he doesn't have any pink tissue around it, and there is no discharge. 

May 3, 2016

Clinic Day

"Well, I never thought I would say this" said our GI doctor, "but we need to back off of the formula a little...." Azer weighed in at 108 lbs today. She even said he could stand to lose a few pounds without harm. And while his weight continues to go straight up on the chart, his height is still not climbing back to his genetic potential. In a few weeks, we will see an Endocrinologist to see if he has a growth problem, and a need for growth hormones. The GI doctor said that if that's the path we chose, it will mean daily shot injections at home. While there is no direct health benefit for him to grow taller, it does mean better quality of life.

His stoma was a bit irritated, so an Ostomy nurse looked at it. His G-button is still fitting well, but she said if he rotates it throughout the day, and use some gauze under it, it should heal fine.

His Fev1 was 84%. His chest X-ray from today looked cloudier than the last time. His cough has been more frequent and junkier, but as anyone around here right now knows, the allergens in the air are very high. The Pulmonologist joked, "sorry dude, you're just allergic to like, everything, outside". So, that doesn't help his lung function. We agreed to see what he is culturing, and if he isn't culturing anything that needs attention, in two months if his PFT's are still low, we will go back on Tobi for 6 month cycles, just in case there is still some Pseudomonas lerking somewhere in his lungs.

Also, May is CF Awareness month! The clinic put these up in the rooms, and encouraged us to take a picture to put on social media.

While we were waiting for X-rays before clinic, Azer noticed the mom of a blog I follow, whose son also has CF. They waved at each other from a distance, and smiled under their masks, lifted their shirts to show each other their G-tubes. Such a small gesture, but very impacting for Azer to see another that does many of the same things he does. He asked a lot of questions later on in the day about what the boy does that is the same as him, and what he has had to deal with that is different. I hope that someday, there doesn't have such a great distance between those who share the same burdens of this disease.