PEG

As mentioned in a previous post 2 weeks ago, we had issues getting to our appointment at Emory. We called and got the procedure scheduled at Northside Forsyth about 10 miles away way quicker than we would have gotten another Emory appointment. SO, on Friday, April 21, we finally were able to get the PEG (percutaneous endoscopic gastrostomy). It is an outpatient procedure in which a tube is placed into the stomach through the abdominal wall to provide a way of getting nutrition, fluids, and medication when oral intake is not adequate. It was SUCCESSFUL and the procedure went just as expected, maybe even better. They were concerned about breathing, which I'll explain below, and had a lung doctor come in just in case. They added oxygen to the Trilogy machine, which we wear at home at night, and he was able to wear the machine during the whole procedure. Jason had some IV medication to put him in "twilight sedation" so that he was in no discomfort.

We also got a chest xray after the tube was placed, which takes some explaining as this is not normal protocol. During the Disney trip, after long days at the park, Jason's body got really tired. He also felt that sometimes when he took in fluids, half was going into his lungs. We spent a lot of time during this trip using the cough machine and Jason's lungs actually hurt. He usually only uses the Trilogy (passive AVAP, for those medically knowledgeable folks) at night and maybe an hour or two during the day. On this trip, he wanted to wear it the entire time when not at the parks. Honestly and selfishly, this scares me. I don't want him to be dependent on a breathing machine! Over the past month or so, Jason has to be very careful how he eats and swallows. He has had quite the difficulty getting calories in. The more fatigued muscles get, the easier it is to choke. It feels like all of a sudden Jason is eating nothing, although in reality, it has been a slow progression. For example, he might have 5 bites of lasagna and it takes 30 minutes to eat just that.

Maybe we overdid it at Disney or maybe this was bound to happen at some point. It was pretty obvious during the trip that Jason did not feel 100%. We talked about options for how to help his lungs-calling the doctor, going to the hospital. We called our Emory lung doctor on Thursday (4/21) after getting home, and they set up an appointment for next week, if only to touch base. By the time we went for PEG placement, Jason actually felt much better, but Dr. Albert did a chest xray anyway. The results were "normal." In just a few days, all that coughing and resting worked! We have antibiotics for next time, just in case.