December 12, 2018

CF Clinic



A few weeks ago, Azer went to the allergy clinic for a consultation. He felt like he didn't get much out of it. We mentioned the allergy shots that target IGE that his pulmonolgist said helps some CF patients. He didn't feel like it would help Azer, but did recommend restarting his nasal spray and prescribed some eye drops for eye itchiness. The allergist said that if/when Azer gets ABPA again, that there is a shot that would benefit him at that time.

At clinic, we told the pulmonogist about how the allergy clinic visit went, and she still believes that the shot would help Azer, so they will do some discussions on how to proceed.

Azer lost a little weight, but his BMI is still great. However, the doctor really wants to see him work on packing a better lunch for school, and trying to eat within the time range of his enzymes working. She also recommended that he should consistently add Liquigen to his night feeds, as this is a ready to absorb fat that is easy for his body to use. He should also consistently use Relizorb, which helps him absorb the fat from the formula all night long. She would like him to continue to gain some weight, to have a cushion for whenever he gets sick, as he can lose a lot of weight within a few days when he gets sick enough.

Azer felt like his PFT's weren't going to be great, but managed to do better than he expected. He sounded fairly clear, despite his wet sounding cough. He continues to feel sick when he takes a week off of the Periactin. The doctor suggested taking more OTC allergy medication and increasing nasal rinses during the off weeks. The Periactin has been working great for his appetite, but makes him very drowsy in the morning. The doctor suggested taking it earlier in the evening, so it would perhaps be out of his body sooner.

He has had a lot of nasal drainage over the past week, to where he describes it as feeling like a stream going down the back of his throat. The doctor looked and saw a visible polyp in one nostril. She wondered if the polyps are bad enough to be occluding his sinuses forcing the drainage down the back of his throat instead of draining out of his nose. We may be going to see ENT a bit earlier than expected.


Azer decided that Mr. Glass Head needed some protection this winter


I would like to take this opportunity to remind everyone to please get their flu shots. It not only protects you, but also protects those in our community that could potentially die from flu complications. If you need proof that it works, take a look at how many died last year, when the flu shot was much less effective than usual!

November 19, 2018

Azer's first 10k

#AzerStrong #CFWarrior

*Lydia*

<http://cffh.convio.net/goto/joggersforazer>

Imagine with Azer <https://youtu.be/qOtsyLSmrbg>
<http://www.azerscfwebsite.com>
AzersCFWebsite.com
Click Here to Help Find a Cure for CF: Joggers for Azer Great Strides Team
<http://fightcf.cff.org/goto/lilhyperfingers>

   

November 13, 2018

Sort of Sick

Azer has still been noticing every time he takes a week off of Periactin, he starts feeling worse, his lungs start to sound more congested, and his allergies are pretty bad. He contacted the clinic, and they pushed the referral to an allergy clinic. It has been scheduled. Last week, it happened again, and he sounded pretty bad. The clinic prescribed 5 days of steroids, but the only thing it helped was his appetite. Azer is hoping that the allergy clinic agrees that the allergy shot that the Pulmonologist suggested will work for him.

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