September 27, 2018

CF Clinic

Today was a long clinic day, time wise. It was time for Azer's annual blood draws and OGTT (Oral Glucose Tolerance Test). He had to be fasting, and had his blood drawn as soon as we got there. He then had to drink the nasty, sweet glucose liquid (he drank it like a champ). They test his blood again two hours later, so we had plenty of waiting time today. 

We were lucky enough to have a large and comfy clinic room today, which was nice.

There was some confusion on his PFT results today. His height was entered into the computer incorrectly today, which changes the margins of the lung function numbers on the computer. So, initially his numbers were way low. When his height was corrected, he was one point higher than last week. So, he isn't as high has he wants to be, but he is within his normal range for this year (it's generally expected that lung function decreases as the years go on).

We spoke some more about possibly seeing an Allergist and an allergy shot. The doctor said generally, allergy shots don't help people with CF, specifically those whose IGE levels are in normal ranges. However, since Azer's IGE is always high, that the allergy shot she wants to try specifically targets IGE levels. This could also mean it could help him out the next time he ends up growing Aspergillus. 

For the past year, Azer has been talking with our Social Worker about Make-A-Wish, researching different possibilities, and reading about other's wishes. He feels like he has come to a decision about what he wants (he really wanted something that he could enjoy with the family, rather than something solely for himself, because he felt like that would be selfish. I told him he can be selfish in that this is his once in a life time wish, but his mind is made up :) So, he brought it up again to the Social Worker, told her what his wish is, and she will make the request! (He or I will share his wish at a later time)

I really can't believe he's old enough for this, but in a little over a week, he will be 15 years old, and he will get his Learners Permit. I asked the doctor if there were any CF restrictions on driving (there aren't any), I asked the Clinic Physiologist about it, and she recommends that I go on some calming medication, our social worker merely wished us good luck, and when I asked the group of them if they thought Azer was mature enough to drive a car, he proceeded to dab. 

Dabbing in his Dabbing Shirt

September 22, 2018

Sick Clinic Visit

Last week, Azer had a sore throat that wasn't really improving. Tuesday, at school, he texted me that his shirt was soaked with sweat and he was feeling really cold. We went to CVS to test for Strep throat, but seeing that his throat looked fine, she concluded that it might have been some other infection and prescribed antibiotics.

By Thursday, his cough was worsening, so Azer emailed the clinic about what to do. He was able to be seen that morning. His PFT's weren't as low as he was expecting them to be. The doctor said his lungs sounded fairly clear, although airflow in the lower lobes is diminished. She changed his antibiotics to one that will provide better coverage for the bacteria he usually cultures. She told him that if his lungs don't feel better over the weekend, to let them know, and they will put him on oral steroids.

If he's still sick by next week, which is when we have our usual clinic visit, we will skip his annual OGTT, as when you're sick, your blood sugars can be elevated.

It's been an unusually wet ending for summer here, and unfortunately because of all the rain we've had, it's been like a second spring as far as allergies go. His cough has been kind of on the wet side for over a month. This is despite him being on a prescribed antihistamine, OTC allergy pills, Benadryl at night time, daily nasal rinses, and two inhaled steroids. The doctor asked if we had ever seen an allergist, and that our main pulmonologist was considering allergy shots, which I'm honestly surprised has never been suggested before. We will bring this up at his clinic visit next week.