October 6, 2018

15 Years



It seems so long ago, and yet like yesterday, 15 years ago. I was handed a medically fragile baby, overwhelmed with what it would take to keep him alive. I had so much responsibility so early on. But, oh I did it; everything those doctors told me to, and beyond.



I held him down when he was only a few months old to force that nebulizer mask on his face. I did hours upon hours of CPT so he could breath.

Eventually, he learned to hold the cups himself, learned to start his Vest on his own, learned to fill his own nebulizer cups.




At such a young age, he knew so many medical terms, and knew what all his medications were for and what they did for his body.



He has learned so much over these past 15 years, but over this past year, he has taken on so much of his own care, it boggles my mind.



All that responsibility that was given to me 15 years ago is now his. Most people I know struggle to get their teenagers to brush their teeth before they rush out of the house to High School. I also struggle to get him to brush his teeth, to prevent a mouth infection caused by multiple steroids. He wakes up extra early to go run to clear his lungs, keeps track of medications that need to be refilled, sterilizes his nebulizer cups, fills his pill box, works hard on his breathing treatments, communicates on his own with the doctors about any changes in his health... This is one tough, responsible teenager y'all.



Happy 15th Birthday Azer! I am so proud of you, and everything you have become.



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.

July 30, 2018

Admission Follow Up

Azer blew a few points higher on his PFT than he did the day he got discharged. He still felt like it was harder that it should have been to get there. The doctor felt like he could still get back to his base line if the weather and his allergies were optimal. The great news is that he feels like his lungs are very clear, and he has been running in the mornings and has not been out of breath. So we will try to make the most of the rest of summer before high school starts!!

Azer also felt that dermatology was wrong about his skin peeling. He said that as soon as they had switching him from Gentamicin to Tobramycin, the peeling stopped progressing. The doctor said that it was a possibility it was from the antibiotic, but that the reaction he had was just undocumented.

He ate very well while in the hospital. His appetite hasn't been great since getting home. He has had an upset stomach and diarrhea for the past week. The good news (sort of) is that I also ended up with these symptoms, so it may be a virus.

While the IPV did great for him in the hospital, and we are persuing getting one for home use, he felt like getting back home and using his vest helping clear out some mucus that wasn't moving otherwise. Of course, him getting back to running has helped him feel 100% back to normal!