Well we're still inpatient at APH. This morning GI came to check him out and thought we may be able to go home. The nurse and I were both worried as to how I would continue to drain his G port at home and he just said we could go home with the same type of drain he's wearing now, but he wanted us to begin periodic clamping and draining to see if he could tolerate it without all the bile spilling out around the GJ tube. Our nurse felt uncomfortable dicharging him if we were still experimenting with what he's able to tolerate.
He agreed also and said to update him toward the end of the day as to how he handled the clamping and draining.
It didn't go well so he decided not to push it and it turned out to be a very good decision.
Later in the afternoon, during a dressing change I noticed a strange rash across his stomach and back that wasn't connected to the GJ tube breakdown. The nurse looked at it and immediately paged the doc who ran up to see it. He's now on a new IV antibiotic. They aren't totally sure where it's coming from but we'll try this IV med overnight and see how he looks in the morning.
They've also started to supplement his regular IV fluids with a bolus every hour to match what he's losing in bile drainage.
On a positive note, he was able to get up and walk a little today. He's very wobbly and off balance but he seemed to think it was funny. Every time he'd stagger and tip over, he would grab my hand and let out the sweetest giggle. He's really an incredible kid.
Daddy came last night and brought the other kids to visit, then they walked down to see the fireworks. I'm glad they didn't miss it. Not exactly the 4th of July I was hoping for (lil man loves fireworks), but I'm glad we got to spend some time together.
As for now he's resting. The last dressing change hurt him pretty badly so he got an extra dose of pain medicine and he finally seems comfortable.
Good night all...