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.

March 29, 2016

Great Strides 2016

You may know, Azer has Cystic Fibrosis. This is a genetic disease. It affects how the body makes mucus. The mucus in Azer’s body is very thick, and causes chronic and frequent lung infections. It also causes him to have a hard time digesting fat and protein. He eats high calorie foods to try to compensate for this, but he is unable to eat enough to gain weight, hence the need for the feeding tube. He receives more than 1,200 calories through it a day.

Azer takes about 20 medications a day, and does about 2 hours of breathing treatments a day to keep his lungs clear. We also exercise and jog. Exercise is one of the best ways to keep his lungs healthy, we’ve found.

The life expectancy used to be only in the teens. But now, the average life expectancy is 37 years. The Cystic Fibrosis Foundation works hard creating new medications, and they are working to find a potential cure, too.

We are walking at the Dallas Great Strides 5k Walk, Saturday May 21st. Check in is at 8:00am being held at the Vitruvian Park in the heart of Addison.  

We are a team this year, called Joggers for Azer. If you are interested in walking with us this year, you can sign up here to join our team


lilhyperfingers@gmail.com

If you can’t walk on Saturday, that’s ok too!! Go to the website, and if you could donate a dollar, we would love it! The funds go directly to the CF Foundation, which goes to research for Cystic Fibrosis.

Dallas Great Strides
5k Walk
Saturday, May 21, 2016
Check in: 8am
Walk: 9am
Location: Vitruvian Park,
Addison, TX

Fun, Food and Much More!



March 25, 2016

Cystic Fibrosis Can Be A Full Time Job

3am, hear pump beeping. Check clock. If it's earlier than 3am, go check to see if he rolled over. If 3am, it's probably ok. Go back to sleep. He's coughing now. Please don't let him throw up or reflux everywhere.

5:15, alarm goes off, Azer wakes up to go to the bathroom.
Get up, Run with him for 30 mins, or run/walk for an hour. Encourage him to try to run harder/faster.

6:30 Azer starts vest and nebulizer cups, and morning G-tube feed.



Getting Some Homework In During Morning Treatment

7:20 am As Azer is brushing his teeth, I fill the pill box. Make mental notes of each bottle and what is getting low, and need to order soon.

Take kids to school. Remind Azer to drink liquids!

Start vacuuming house. Vacuum everyday in case there is dirt, or dust that could aggravate his asthmatic component
Put mask, nose attachment, and spacer in rubbing alcohol, swap nebulizer cups in vinegar.
Rinse nebulizer cups and put in sterilizer. Make note of level of distilled water.
Take Aerobika apart, clean and put in sterilizer
Take things out of rubbing alcohol and air dry
To help me remember to take Tobi, albuterol, and spacer with me to school later, put in ziplock bag

Start cleaning kitchen. Let cleaner sit in sink drains in case there is Pseudomonas in there
Let cleaner sit on kitchen floor spot of formula dripped
sterilize dining table in case there is staph coughed on it, never know it might make him sick.
Clean their bathroom. Sterilize his toothbrush, let cleaner sit in drain, clean his toilet, notice there is remnant of fatty stool. he didn't eat much for dinner, I don't know why he's not absorbing like he should.
Pass by his room. Grab the empty formula bag and empty formula boxes. Take to kitchen to recycle, clean his G-tube extension with hot water.

10;45am Time to go to the school. Grab ziplock bag. Make sure Tobi is in there. Nurse calls him into the office. Albuterol, 10 Aerobika blows. I do a push on both sides of his chest, he sounds like crap. He does his Tobi and he goes to lunch.

I'm free till 3pm! Keep track of copay programs, insurance, what needs to be printed, and sent in.

One Week's Amount of Pills


3pm, drive to school, pick up kids. Home by 3:30. Start Aerobika. Formula time, bolus feed. Make mental note of when I need to order formula next. If the pill box has oral antibiotics, take the vitamin out or he might vomit. Ask how many times he's had a bowel movement, even though he obviously had a fatty one last night. He can get constipated in a day. Use judgement to decide if he needs Miralax or not.  Try to get him to clean  his room. (Way harder than anything else here... lol)



Bolus Feed


5pm, Make Scandishake in blender. Boost still hasn't gotten here. Why? Remember to check Live 2 Thrive program, and check status. Need more milk, using about a half a gallon a day.

6pm, Azer needs to eat dinner. Make sure dinner pills are out of the box. He eats dinner does the Scandishake as a bolus.

7:30, start evening nebulizers.

Cystic Fibrosis Weapons

About 8, start CPT. Husband has been helping me with this lately, as I have had sternum pain (from doing it so often? I don't know) Pushes on all sides of his chest while he huff coughs. Aerobika, Symbicort, Nasal Spray, Tobi. Make sure Azer brushes his teeth, or he might get oral thrush from steroids.

Make sure nebulizer cups are in vinegar.

Start night time feed. Make sure he takes his pills and they're not sitting on the night stand. Tape him up so we don't end up with two possibilities. Possibility #1, he rolls over on it, if no one hears it beep, he doesn't get the full dosage of the night time feed, and he desperately needs those calories. Possibility #2, it becomes disconnected somewhere and he may or may not wake up to stop the pump, and we end up with soaked clothes, soaked bed, floor, etc.  Make sure bed side fan is pointing at his face. Feel scared that he feels the need to have air blowing on his face, possible night time low oxygen. Hope we don't have to deal with oxygen soon.

Why do all of this? If one thing I did will make him a little healthier, help him live just a little longer, spend more time out of the hospital, have more assurance that he will outlive me, then it's worth it.

You can help make our day a little easier by helping fund CF research. You can join us at our Great Strides Walk, or help raise money by clicking here. Thank you :-)

http://fightcf.cff.org/goto/lilhyperfingers

March 11, 2016

No Pseudomonas!!

So, for the past two weeks, Azer has said he felt more congested. He also started coughing up brown to black chunks of mucus in the morning. So, Monday we went to get cultures, PFT's and an IGE level check just in case he had ABPA again. 





He gained 2 pounds in a month, but his FEV1 was down a little from last month. 

A few days ago, we got the test result back from the IGE and it is lower than was last September. We've been waiting expectantly to see if he is culturing something, but today it finally came back negative for Pseudomonas and for Aspergillus! Yay! 

February 23, 2016

Bone Density Scan



The Bone Density Scan doesn't even need it's own blog post, but based on our experience today, I felt like it did. 

So, at our last CF appointment, our GI doctor said he would need a bone age study to rule out growth problems and osteopenia. I didn't realize until today that he was actually having a bone density scan done instead. The orders to do the bone age study may be there, but I am not sure. 

Anyhow, the nurse/technician was nice enough. She was trying to explain to Azer what she was going to do and why. He was having a sort of teenager-ish time, and was kind of giving her the "I really don't care how and why, let's just get this over with" look. So, I mentioned to him that we're getting this done so we can maybe find out why you're not growing very fast. The technician hurriedly explained to me that this is not what this test is for, and that it was to find out how dense his bones are. From everything I've read before, I assumed the bone density tests would start when he was 18, so I mentioned that. Her responses felt very argumentative, so I just stopped talking. 

She first scanned what looked like his spine. She then had him sit up, and place his right arm on the table to scan it. When she was about to start scanning his right hand, she asked if he was right handed. I said that I was sorry, he is left handed in baseball, and most other things except for writing. I told her when he was about 4 years old (at that point I had no idea he could possibly be left handed) I taught him to write right handed. It wasn't until later when we began to play catch together that I realized he was left handed. By then, he was already pretty good at writing with his right hand, so it stuck. (I realized recently how left-dominate he is when we found out he is left eye dominate as well). She then told me that it can be very damaging for brain development to force someone to write with the less dominate hand. By now, I just decided to stop defending myself, and just looked around the room while the computer "measured" his bone density. 

It was a pretty quick appointment, so he was able to go back to school for the rest of the day. 

This evening, as I was going over today's visit in my head, I texted Azer. The screenshot sums it up lol.