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!

June 19, 2015

PICC Line is out!

Yesterday was Azer's follow up appointment with our CF doctor. We have been working hard to get his lungs clear by running in the mornings again (until he sprained his ankle Tuesday lol), and manual CPT. The GI doctor was able to get his reflux under control to the point where he has had almost no trouble with it at all, so coughing all the junk out has been much easier. Doing IV's at home is always a bit challenging, but in the end, it is always worth it for him as he gets to play with his friends and ride bikes. Of course, there were moments of longingly looking at the swimming pool. 

We have been very vigilant about keeping up with the bolus feeds, and saw the rewards of our labor. He is nearly 77 lbs, and for the first time in his life, he is finally over the 75 lbs! He also grew about a quarter of an inch in a month. The doctor still wants to see his weight closer to the 50th percentile, and hopes if we get his weight higher, that his height will inch back up towards the 25th percentile. 

He got a 92% on his PFT's. I was surprised it was lower than when he was in the hospital. The doctor took time to explain that because he got taller, the calculations for lung volume can change slightly. I feel like no mater how many times they explain what all the other numbers on the PFT's mean, it still never makes complete sense! 

The doctor felt like Azer had spent enough time on IV antibiotics to have his PICC line removed yesterday. 

Because Azer has been playing a lot outdoors, he has been sweating too. This can cause the sticky dressing to come lose, and expose the wound to infection, so we've had to use extra dressing to keep it on.  The removal of the actual catheter isn't painful at all, but removing the dressing (or any dressing changes) can be very painful. It is much worse than removing a band-aid, as the special dressing they use is meant to stick as well as stitches. Cleaning the area stings as well, because removing the bandages does cause some skin irritation.

We are going to do another week of oral antibiotics just to make sure that he stays clear for a good while. 

Luckily, his sprained ankle is healing quickly, and he was able to get some batting practice in for the first time in two weeks!  

June 11, 2015

Reflux, blech!

So, our GI doctor has been out of town, which was part of the problem of treating his reflux in the hospital. Yesterday, his reflux was terrible, and he couldn't hold it down about an hour after his afternoon bolus. It was a little scary, with the poor kid retching and crying in pain. I can't deal with vomit, so he was trying to shoo me out of the bathroom. He was so bloated after, even though his stomach was pretty much empty.

I called the CF Clinic, and was very grateful to have someone answer the phone (do to some awesome people :-) and she was able to get a hold of the GI doctor quickly, and we made a few small changes to make it through the night. We went to clinic this morning. We didn't do another PFT since we had one just a few days ago in the hospital. He somehow managed to gain a pound and grew a bit.

We increased dosages of a few medications (bethanechol and zantac), added some new medications, some to help the stomach empty, some to help the stomach hold food better, and some to try to coat the irritation (Carafate). I learned today that when he has a lung flare up, it can also cause inflammation in other parts of his body, and can cause his GI system to work even slower than it normally does. So not fair for someone who needs to eat more when he's sick! The doctor mentioned a new type of Proton Pump Inhibitor that has helped a few other patients. It might be tricky to get it, but we're hoping.

We had a dressing change on his PICC line today. We plan to do one next Thursday, or possibly have it taken out! We might get an endoscopy done when the IV's are over to make sure there aren't any other issues causing his reflux and tummy troubles.