Life since March has just been a little bit wild, crazy, and scary. There has been some happy, fun, and peaceful times as well.
A month ago, Ruby's little belly started to get very big, and she put on about 2 pounds of fluid in a week. She started sleeping really terrible, up every hour or two, and of course Matt was out of town. I knew she was not feeling very well and started to get worried. UCLA wanted her to be admitted, so Matt flew home early from his business trip, and met us there. During this stay in the hospital, they were able to do some very detailed testing to finally figure out what is going on with Ruby's liver. She has cysts that are blocking her bile ducts. One of the cysts is the size of about 20-30% of her liver, and is very deep, making it inoperable. They also suspect that there are several other smaller cysts on the smaller bile ducts further up on the biliary tree. We do not have a clear cut diagnosis yet, and were told we won't until after transplant and they have biopsied her liver. It could be a form of Caroli's Syndrome. Her condition mimics symptoms of Biliary Atresia.
So, after almost two long months of waiting, we finally got some answers. She was immediately evaluated for the Liver Transplant Waiting List, and was activated a few days later. The list is not prioritized by time, rather by a score that is calculated by how severe your liver failure is. It ranges from 0-40. She was listed with a 16, and a week later raised to 18, and is currently a 19. Most transplants occur between 20-30. One of her doctors said that he thinks that she will need a new liver in the next three months.
After a two week stay, her fluids were under control, and we were able to bring her home on Easter Sunday. However, she started losing weight pretty quickly. She lost almost a whole pound in one week. We were readmitted two weeks ago to start TPN, which gives her all of her nutrition through her PICC line. She gained a pound and half while we were in the hospital!
She is looking a lot bigger these days! She is getting some pudge on her thighs! It makes me so happy to see that.
This is kinda a quick and dirty update, but I needed to start somewhere. I plan on getting better about blogging when I have some free minutes!!!
A month ago, Ruby's little belly started to get very big, and she put on about 2 pounds of fluid in a week. She started sleeping really terrible, up every hour or two, and of course Matt was out of town. I knew she was not feeling very well and started to get worried. UCLA wanted her to be admitted, so Matt flew home early from his business trip, and met us there. During this stay in the hospital, they were able to do some very detailed testing to finally figure out what is going on with Ruby's liver. She has cysts that are blocking her bile ducts. One of the cysts is the size of about 20-30% of her liver, and is very deep, making it inoperable. They also suspect that there are several other smaller cysts on the smaller bile ducts further up on the biliary tree. We do not have a clear cut diagnosis yet, and were told we won't until after transplant and they have biopsied her liver. It could be a form of Caroli's Syndrome. Her condition mimics symptoms of Biliary Atresia.
So, after almost two long months of waiting, we finally got some answers. She was immediately evaluated for the Liver Transplant Waiting List, and was activated a few days later. The list is not prioritized by time, rather by a score that is calculated by how severe your liver failure is. It ranges from 0-40. She was listed with a 16, and a week later raised to 18, and is currently a 19. Most transplants occur between 20-30. One of her doctors said that he thinks that she will need a new liver in the next three months.
After a two week stay, her fluids were under control, and we were able to bring her home on Easter Sunday. However, she started losing weight pretty quickly. She lost almost a whole pound in one week. We were readmitted two weeks ago to start TPN, which gives her all of her nutrition through her PICC line. She gained a pound and half while we were in the hospital!
She is looking a lot bigger these days! She is getting some pudge on her thighs! It makes me so happy to see that.
This is kinda a quick and dirty update, but I needed to start somewhere. I plan on getting better about blogging when I have some free minutes!!!
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