November 3, 2015

Results from the Endoscopy

So, the results from the endoscopy biopsies are... he has no sensitivity to lactose or sucrose, but he has superficial gastric inflammation. They are not sure what is causing this, and so far the only suggestion is to increase his Nexium to twice a day. He has vomited once since we have done this, and seems to be still having reflux, but mostly in the morning. So, hopefully the double dose of Nexium will take effect soon! Despite vomiting, he is continuing to steadily gain weight, and he is over 90 lbs now. I hope his height will catch up with his weight, because shopping for all new clothes has been challenging!

October 22, 2015


Our GI doctor wanted to do an endoscopy on Azer in addition to the gastric emptying he had a few weeks ago. This was to see if there are any visual reasons why he is having so many issues with vomiting and reflux. 

He was very calm and relaxed about it. When the anesthesiologist came in, they asked Azer if he wanted any Versed. Azer said he was fine without it, so they took him to the surgical room and started him out on gas (it was supposed to smell like bubble gum, but he said it didn't smell that great lol)

The procedure only lasted about 30 minutes. The GI doctor told me that he looked like he had irritation to his stomach. She took small biopsies of his stomach and small intestines to see if there were any issues she couldn't see with just the camera. She also put a new G-button in, as the old one had lost a lot of water, and also put a longer button in, as his old size was fitting kind of tight. 

He's had a cough for about a week, but nothing serious enough to hold back the procedure. When he woke up, he kind of gave the nurses a bit of a scare, as he couldn't stop coughing. They had to do several treatments of a Xopenex. It seemed to help him breathe better. 

When they were confident that he could breathe fine, we were allowed to leave! He was kind of woozy the rest of the evening, but he was able to hold down a little food, and tolerated his night feed just fine. Oh, and also he weighed in at 89.9 lbs yesterday! Lets just hope he starts growing on his own now! 

September 25, 2015

Gastric Emptying Study

We had the Gastric Emptying study today. We won't know the results until radiology takes a look at the pictures.

He had to be fasting for 4 hours before the procedure, so he ended up having to sit through lunch at school.

The ceiling in the room was pretty cool to look at.

We were told to bring something he would eat fast, such as pudding, yogurt or applesauce. He chose applesauce. (I find this funny because if you're a CF mom, we have fed our kids more applesauce than anybody knows! You'd think he'd be sick of it lol) They mixed some radioactive liquid with it, which is thankfully tasteless. He had five minutes to eat it.

He then had to lie still for an hour while they scanned his stomach. We got to watch the Lego movie... again!

He had to cough several times during the scan, but they said it didn't affect it that much since it's quick motion.

I'm hoping they find something we can fix!

September 22, 2015

CF Clinic and Annual Blood Work

So, today was one of those longer clinic days. He had to be fasting starting at midnight for his glucose test today. They drew blood for a number of tests when we first got there. He then had to drink a few cups of glucose solution and wait two hours.

He weighed in at 86.8 lbs today! He gained almost 8 lbs in just two months. It appears the higher calorie formula is working! On the down side, he just didn't grow much at all, and hasn't, even since increasing his caloric intake. We will see an Endocrinologist in a few months who may have some ideas as to how to handle this issue. We hope his body will kick it in gear and start growing now that it has some extra nutrition.

About two weeks ago, we had a week of vomiting only in the morning. After switching his morning medications to afternoon, it seems to have cleared up, but he is still having reflux frequently. Because of this, the GI doctor wants him to have a gastic emptying scan to see if his stomach is holding onto food for too long. She also wants to do an endoscopy to check for any other issues that could cause problems.

He got an 83% Fev1 on his PFT. It's down about 10 points from last time. Because it seemed like the Symbicort worked well last month, we are going to start it back up to see if the decline is related to his asthmatic/allergic components.

After the two hours passed, they pricked his finger to test his glucose again, which came back normal. No CFRD! (CF related diabetes). Later on this week, we are scheduled for the gastric emptying study.

After fasting and a long clinic visit, we decided tacos sounded great.

July 20, 2015

Sick Visit

About a week off of antibiotics, we started Flagyl to combat possible C-diff in his intestines. The Flagyl seemed to cause more stomach aches and diarrhea than anything, oddly enough. His cough started to come back soon after that. So frustrating seeing as we just finished a very strong course of antibiotics! He has been out of breath during our runs, to the point of not being able to keep up with  me (and I run slow, believe me). Another thing that has also been worrying me is that he has been so out of breath while swimming, he is completely out of breath, even with short distances. So, of course we increased treatments to try to clear out any extra mucus collecting in his lungs. I waited a week to see if it would improve any, and when it didn't, I contacted our clinic and saw the doctor today.

His Fev1 was down a bit, but not as bad as we thought it would be, given how the cough sounded. The doctor looked over his allergy test he had when he was in the hospital last month, and while he was mildly allergic to "everything", his IGE to a certain type of grass was literally off the charts. She believes he is having a horrible time breathing because of allergies. So, we have a plan to start a different inhaled steroid, and to also add OTC allergy medicines to try to calm his asthmatic component down some.

On the plus side, he gained a few more pounds and also grew, so the higher calorie formula is working well! Another thing we learned is that adding salt to his boluses do not work. It causes stomach irritation and very bad reflux, so we have stopped that for the time being. We will see if the allergy plan works and hopefully it will and we will stay off of antibiotics for a while!