Liver and ERCP

I'm not really sure where to start. I'm pretty wiped right now and have had to fill in so many folks, I really should remember to write here first and then point people in this direction. So, it started last Thursday, Naomi finally had her liver biopsy and an ERCP. A fluoroscope test to see if the ducts near the pancreas and liver are malformed are not. And good news they aren't, all normal. Still doesn't explain her chronic pancreatic problems, but it's one more possibility cleared from the list. The liver biopsy went well and we should hear from it in the next 2 weeks or so.

So the procedure is finished, they check her in to the hospital, run some tests, all is good, its now 6pm and we head home. Get home around 7:30ish. By 8:30 she has a slight fever, by 9:30 we have hives, by 10 pm we are at the emergency room. Five hours of waiting results in the tests saying she has acute pancreatitis, and we aren't "comfortable" handling her case here. (It's a small town hospital and I think Naomi scares them). So its another ambulance ride and this time to Sacramento, finally settled in the hospital room around 8:30 in the morning.

Friday was quiet she slept a lot and seemed to be doing better. Saturday was horrendous. That day was the worst pain I have ever seen this little child in. They keep trying to tell me it was a drug reaction, since she was agitated and crying, inconsolable, and scratching. I kept trying to tell them, this is her reaction to pain, she scratches all the time. They take her off narcotics, I wanted her to have more. It was 12 hours of torture for us watching her cry and nothing helped. They ran a few more tests that all came back "normal" (I would like to add I really really do HATE that word these days). Finally around 7:30 in the evening she calmed. They wanted to tell me it was the benadryll they gave her but that was well over 40 mins before and it went into her central line so it would have had an immediate reaction. I did mention that benadryll makes her awake, but they wanted to try it anyway. I was not lying. Despite having cried almost nonstop for 12 hours, Naomi slept a total of about 3 hours that night. She was awake til 6am. She wasn't in pain by then but she was wide awake. I need a note from my regular doctor that says "Listen to Mama, she knows her child."

Having talked to her regular GI doc on Monday, we think her pancreas sort of "froze" up trapping any bile and causing intense amounts of pain. Around the time she relaxed on Saturday is also the time that bile started flowing from her vent in her g-tube. She put out a ton of bile Saturday night and into Sunday.

Once she was over the pain on Saturday things progressed like they normally do when she has pancreatitis. Her enzyme levels start dropping like a rock, she perks up, we finally fed her late Sunday and she was fine. She tolerated her feeds, her levels stayed lower and Monday we were sent home.

And so what did we learn from this. We learned that if it can go wrong it will, 15-20% of post ERCP patients get an acute flair, that would be us. We also learned that doctors need to listen to the Mama, there were many frustrating moments where I just felt they weren't listening to what I was saying. And finally, I knew this part, but I thought I'd share. Hospital cafeteria's are horrible and the beds are even worse.

I can write all this happily since I can hear Naomi giggling at the TV and rolling around on her mat. She is such an amazing kiddo, you never would have thought she just got out of the hospital yesterday. We are taking the day off today, not because she needs it, but because I need it. She bounces back, I collapse. It is definitely time for a spa day.