Another Diagnosis? We Hope Not

We've had a difficult last few days. Unfortunately, Mason hasn't been tolerating his daytime feedings very well for a while and it has been worse since the button was placed on Tuesday. He appears to be quite painful after we feed him and gets quite upset. His heart rate races, his oxygen need goes up some, he gets really fussy, and he drips sweat! We're not really sure why this is happening, but are running with a few theories (the most likely is #2):

1. He's still really sore from the tubes being exchanged
2. We've changed a bunch of things in the last 3 weeks and this is the straw that broke the camel's back so to speak (stopped 1 medication that helps move things through his digestive tract - Reglan, decreased an anti-acid medication - Prevacid, changed from milk based to water based formula - yes, the freezer is finally empty, exchanged stomach tubes, and increased the amount we've been feeding him - we're up to over 3 ounces in about 20 minutes now, not a lot for a regular kid, but a ton for Mason). Seems like a lot of changes in a short amount of time for him.
3. He has a rare side effect of the surgery called Dumping Syndrome (the stomach empties way too fast and the intestines cannot handle the volume and become extremely painful)

So, in response to the continued and worsened symptoms, we've re-started and increased a few of the medications. We did notice some improvement after increasing the anti-acid medication, but it appears that things are a little worse today after starting the medication that moves things through the digestive tract. We'll continue to monitor and hopefully figure out what is going on sooner than later.

On a much more positive note, Mason's oxygen need has been pretty steady over the last few weeks (other than the brief time we have to turn it up after his feedings). We have been able to decrease his steroid dose by 1/2 without any change in his need. It's wonderful to see his oxygen need staying so stable! We are very encouraged by this and eager to see his lung doctor on Tuesday to see what he thinks.

We have another round of appointments coming up in the next few weeks (RSV shot Monday, lung doctor and speech pathologist on Tuesday, and orthopedist on the following Friday). Hopefully all will have positive results!