So we finally are getting some answers. Naomi's biopsy came back showing scarring and inflammation. We expected to see a fatty liver due to her malnutrition issues, not this. Dr. D sent the sample down to UCSF to double check and get a pathologists opinion and the best match is autoimmune hepatitis. It's not an exact match, with the patterns I guess, and but all the other tests and what they saw in the biospy leads to an autoimmune hepatitis. We will draw blood later this week to determine which type. I guess its even possible those will come back negative, but this is where everything seems to be pointing. In most cases this disease doesn't show up til folks are in their teens, so she is, as usual, an odd case. Also it is likely that this autoimmune disorder is why she has chronic pancreatitis. Her body is attacking itself.
The good news is finally someone has said to me "we think the itching is caused by the liver." Hallelujah! I've only been saying this for over a year now, and the even better news, there is something she can take to help. Its a bile salt that can help with itching and may even help with the inflammation. And it has few, if any side effects. That she starts right away. The treatment for the hepatitis I'm not sure of, that will be figured out when they get the lab work later this week.
So today I give thanks for a test that's not "normal." We don't want there to be a problem, but when you know something is wrong and no one can figure it out, its so hard. You feel helpless. Now we know where to start and hopefully what to treat to make her life better.
Monday, March 24, 2008
Tuesday, March 18, 2008
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.
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.
Friday, March 7, 2008
The Bed Saga
Sooo, finally got the bed in a giant crate last Thursday. I'm only now posting what happened over the weekend as I needed a few days to forget this whole ordeal. Basically this is how it went.
- Crate in garage. Very Very large crate.
- Crate torn down, bed removed with much difficulty. (things like removing wheeles and angling bed just the right way while standing on one leg and balancing a hula hoop)
- Realization that bed is to big for doors and does not come apart despite what the salesman told me
- Much sadness and more than a few tears. Good thing is hubby had the decency to keep his thoughts to himself. Probably the fear that I'd stuff him in the crate and send him back with it.
- Call out to Perfect Gifts (prayer group) and Friends
- Julie and Lavonne come over to and Joy and her husband Joey come over, prayer answered.
- For the first time in 30 years the window in Naomi's bedroom is removed.
- Bed IN! Actually getting the window off was worse than getting the bed in.
- Whew, no more bed stress til we move and it has to come back out again. Oh the horror.
So that was this weekend. The good news is despite my real fears that she would hate the bed (now that would have seen some real tears) Naomi seems to be OK with it. I do need to make bumper pads as she does roll quite a bit, but no major issues with it so far. I would like to say that she now sleeps through the night, but I can't. I really don't think that was ever a bed issue, more of a brain issue. But at least I know she is safe and so I can sleep a little better.
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