Sunday, July 5, 2009

Still here

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.

I agreed.

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...


  1. Sheesh, what is causing all that bile to come out? Do they know why he's producing so much? Hopefully this gets taken care of soon.

  2. Stephanie - Has he had an abdominal CT to check for an annular pancreas? This is where the pancreas splits into two lobes and grows in a circle around the intestine. Sometimes this not only creates a blockage int eh intestines making backpressure in the stomach, but it also does something to the bils ducts. This may be the place int he intestines that the bile ducts come out (?) Anyway, Christopher has an "almost" annular pancreas. The good news is that the two lobes are not fused cuasing the blockage all of the time, bad news is that they are not fused. His intestines can go in and out of the pancreas. I he is NOP for awhile and the intestine goes into the annual pancreas, then we weed him - guess what?!? Bile and food SHOOTING out of his tube and tummy!!!

    Also, with the Prevacid, most docs don't even think of this until you bring it up, but MAKE SURE it is given at least an hour after any other meds. It coats the stomach and shuts of the acid producers. If youhave meds that NEED the acid or are absorbed in the stomach or upper intestines, the Prevacid will prevent that. Especially seizure meds. I also wouldn't go back to Zantac, even if given the chance. We have had 3 cardiologists tell us that heart kids should ONLY be on prevacid. The only reason they are put on anything else is because of insurance. If your doc writes a note that says this is the only med that can be used there should not be a problem covering it.

    Hope things start going better. Still praying for you! Hugs!

    Steph and Christopher

  3. I love your son's name - is it Italian?
    I am sorry to read your son is having so many button troubles as well - you are so right - eating is not supposed to be so hard! I have been on the internet a lot too trying to find some answers. It's not very common for someone my age having a mic-key button here in Austria and I would love to get some answers from fellow mic-key button users in my age range. Hope your son will feel better soon!