Same Doctor, New Plan

I know we've done "New Doctor, New Plan" before, but now we're going with a new plan even with the same doctor. I hesitate to even lay out the new plan, as the odds are good that everything will change yet again, but here's where we are for now....

This morning Andrew had a four hour sprint. Toward the end, he got quite fussy due to a dirty diaper, and though they were able to calm him down, it left him a bit tired...he was working a little harder to breathe, so they decided to start the ventilator breaths up again. He made it three hours and forty-five minutes, but there was apparently still some concern. He's also continued to spit up multiple times per day. There's bile in it, most likely because the GJ-tube is holding open a path for the bile to move up from the small intestine and into the stomach. They haven't been able to increase his feedings past 6cc per hour, and they want to make sure that he doesn't aspirate anything (breathe it into his lungs). He's not responding to medications (Prilosec and Reglan) that are supposed to help with reflux, and there's no end in sight. Everything seems to be moving through correctly, as he's going to the bathroom without a problem, but they want to confirm that there's no physical blockage anywhere in the system.

Between the breathing issues and the feeding issues, here's the new plan:

• Wednesday- Perform an upper gastrointestinal study, by watching how liquid flows through his digestive tract using a fluoroscope.
• Wednesday- Give him his two month vaccinations, which were skipped when he actually turned two months old. Some children have reactions to these vaccines, so he'll be given Tylenol (for fever) and watched carefully for two days.
• Wednesday- Increase the sprints to three times a day, at three hours each time. Perhaps it was the four hour duration that stressed him, so maybe this will help.
• Thursday- Continue with three sprints.
• Friday- Extubate.
• Mid-September- Perform a Nissen fundoplication, creating a one-way valve in the stomach so that reflux will no longer be a problem. The surgeon wants to wait at least two months after the last abdomen surgery.

Hopefully extubation will also cut down on the vomiting, as he will no longer have a tube gagging him all the time. The GI study should also rule out other issues, and perhaps will give them ideas for alternative treatments. The extubation delay until Friday should provide a clearer picture of whether the sprints are working and how he'll do when he comes off the ventilator. It will also allow D and I to travel to LA for my grandma's service on Wednesday night. We planned for D to stay here and keep an eye on Andrew during his extubation, but now we'll both be free.