June 28, 2016

Heat Exhaustion And CF

This past weekend, Azer's team had a tournament. On Saturday, they had two games. He pitched several innings. He felt alright at the end of the day, but hadn't drank enough fluids and felt very tired.

Sunday, they played one game. He had started his morning bolus a little later than usual because he slept a little later. By the time he needed to start warming up on the field, he said his stomach still felt full, and he sat in the dugout to avoid vomiting. He had pitched a little while, and drank mostly water in the dugout between innings.

That evening at home, he still hadn't drank much more. We started to run some Gatorade through his G-tube, and he vomited it all up. He said he felt very tired. He ate a small amount of food for dinner. In the middle of the night, he ended up vomiting up his night feed. He said he was still feeling physically exhausted.

After communicating with the CF clinic, we decided to skip a bolus feed, and run Gatorade through his G-tube throughout the day.

We have been in the ER before due to dehydration. Apparently, in Cystic Fibrosis you can have heat exhaustion caused by low sodium in the blood. So, by drinking water in addition to aggressively sweating in hot weather, the salt in the body is not being replaced and this can cause hyponatraemia, which is having a low sodium level in the blood.


June 10, 2016

New Mic-key Button Size - Again!

So, for about a month, Azer continued to have pain around his stoma. He said it was in the muscles around it. The last time he felt like this, we had to put in a larger sized Mic-key button. We managed to battle the infection of the stoma itself with the oral antibiotics, and special gauze they gave us. However, the pain remained when he coughed, and when his stomach was not completely full. In May, the ostomy nurse didn't think he needed a bigger size. I could tell he was getting tired of dealing with this pain, so we were able to get a quick clinic visit with the ostomy nurse again.

Azer explained to her how it felt, even though the button could still turn freely. She left to go find the next size up, but it was unavailable, and the one she did have was a whole half size longer. She agreed to put it in him, and see if we have any leakage.

Within seconds, he was pain-free. The whole drive home, he was relaxed and kept commenting on how much better it felt. I guess he didn't realize how much discomfort he was in until it was relieved!

This is what happens when he sits down lol
Bigger Size

Last week, he ended up coming down with a virus that came with a fever and cough. He was feeling pretty bad. Luckily it was short lived, but as it frequently happens, the virus leaves, but the congestion stays. We have been doing short sessions of manual CPT 4-5 times a day to try to help him clear the extra mucus. It's hard to say at this point if he won't need antibiotics soon, but it definitely helps him breathe better.

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.