Bubble Wrap

Despite everything he goes through physically, our Brett is full of life and joy. This 35 second video is an example of how much delight he takes in the simple things. He is already laughing at the beginning just in anticipation of what Mark is about to do! Be sure your speakers are turned on :)

Brett's Latest Appointment

Last week we had an appointment with Brett's gastroenterologist at UNC. Brett has been having a lot of issues with tolerating his feeds. This came about over the last 3 weeks to a month ago. By "not tolerating," I mean that he would scream and cry and I would have to "vent" his stomach by allowing the air trapped inside the stomach to come out through the g-tube. Once all these air bubbles came out, he would be fine. This happens occasionally, but it was beginning to happen about 2-3 times a day! Also, he has always gagged and sort of dry-heaved with his bowel movements. But it had been getting worse.

The problem with all this is that he was not getting all the feeds he needed to assimilate the nutrients and grow. This became a big concern for us since weight gain is such a difficult thing to accomplish when a person has CF, and he needs to grow. Plus, half the time I had just given meds in the g-tube, so I didn't know how much medicine he got, or whether I should give more.

The first course of action for me was to call his nutritionist at UNC. We decided to slow down the feeds and go back to running them 22 hours a day. That is only 2 hours off! So it cramps our style a little bit, but it has seemed to help. She talked with his pulmonologist (main overall doctor) and he suggested another visit with the GI doc. The visit lasted 2 hours, and it fell right at naptime. I am training a new sitter, so I brought Gantt along this time and she kept him in the waiting room. Therefore, both boys were deprived of their usual morning nap.

Here they are after the visit:

Gantt

Brett

The visit was fruitful, though, and several changes were made. First, we are giving him instant mashed potato flakes mixed in a little water through his g-tube. The hope is that the potatoes will help bulk his stool so that his stool is not so runny and painful to pass. Second, we started him on a medication called Baclofen, which is a type of muscle relaxer. This is supposed to relax his stomach muscles some so he may not gag and retch with each bowel movement. Third, we added probiotics to his daily supplement regimen. So far, these changes seem to have helped. He is definitely not gagging as much, and we haven't had to vent so often. Now it's maybe once every other day or two, so he's keeping the feeds in and beginning to gain the weight back. Now I'm beginning to advance the rate of the feed so we can get back to tube feeding just 20 hours a day - 4 hours off is much more tolerable than 2 hours off during the day.

Wordless Wednesday

Bath Buddies