Now that life has started to regain some of it's normalcy at home, I've started to do more research. Reading all the articles about biliary atresia that I read so franticly in the hospital and just trying to get my head around long term care for Mario. I found this story today about a little boy who went through what Mario is going through - hit very close to home...and thought it was worth sharing: http://www.chop.edu/consumer/jsp/division/generic.jsp?id=85239
Many of you have asked about long term impacts, next steps, etc... I'll do my best to explain what I understand so far:
Like the boy in the story, we have to be very careful about fevers now. As the doctors explained it, Mario is at risk of choliangitis. Caused by bacteria being able to get from the small intestine (backwards/up) to the liver now since he has had a Kasai. So, unlike normal kids who get a fever and you wait a few days to see if it passes, Mario has to be taken in immediately if fever occurs and the GI doc said they usually just give antibiotics so they can be sure he doesn't have/get choliangitis.
That is really the main concern for now. There is no way to know if Mario might at some point need a liver transplant, we will have to take things one day at a time, month at a time, year at a time for now on and just keep our hopes up that the goods news we've had thus far will continue. We have some great doctors and have every reason to believe Mario's liver will function normally going forward at this point. So, continue to think positive and we'll certainly keep everyone posted as we get more details in the weeks to come.
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Garden of d'Lights December 2010
13 years ago
2 comments:
Let me tell you that seeing those pictures brought back so many memories. My Caden looked just like that when he was a baby. So skinny but so happy.
I found you on Liver families and wanted to say hi! I post on LF under liver kids upatdes "caden before and after" there are pictures on there that look just like your little sweetie :)
I have a great friend Cindie who lives in your state and uses the same hospital. Her son Kaden(yes our boy's share a name) had his transplant at Children's in December. I hope to keep in touch and I pray things work out with the kasai and no nasty cholangitas!
Christi & Caden thompson
www.caringbridge.org/visit/cadenthompson
The pictures of Mario remind me so much of Anthony in the days before and after his attempted diagnosis! Anthony wasn't officially diagnosed with BA until AFTER his transplant, so I don't know much about cholangitis, etc.
Today, though, Anthony is a healthy, happy and ACTIVE almost four-year old.
Mario is doing so well! Keep up the good work, little man! :)
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