In the PICU
Afton is a week past her surgery and bile continues to drain outside her body. Her skin continues to get better but is still a little raw and itchy. We have noticed that no matter how many calories we get into Afton she hasn’t gained weight. It was this week that we noticed that she was looking more unhealthy.
Last night she woke up around midnight and couldn’t get comfortable to go back to bed after that time. We weren’t sure what was bothering her but knew that it was something more than her skin irritations. She threw up in bed a number of times. This morning any liquids that we attempted to get into her would quickly come up. Her throw up looked like it had blood in it. She was exhausted and almost seeming delirious. After calling the doctors they told us to go to the ER.
For the first few hours in the ER she was so weak and would often take naps with her eyes open. It definitely didn’t seem like normal exhaustion. After a series of tests, they found that her potassium was dangerously high so they moved her to the intensive care unit. Further results showed very poor kidney function.
Her labs showed signs that would suggest serious dehydration. Physically and mentally she seemed to start to return to herself after a couple hours of IV fluids. As of this evening, her potassium has normalized and her kidney function is heading in the right direction. We need the doctors to validate but the thought right now is that too much liquid was draining into her bile bag. We have been dumping that out and therefore taking away nutrients and fluids that she needs.
In hindsight, it makes sense because Afton hasn’t had many wet diapers. We didn’t think much about it because there was so much liquid (that looks like pee) coming out of her. We just assuming this was supposed to happen.
Assuming all goes well with her return to recovery, we will need to figure out how to get her more fluids without an IV. Right now they want to try feeding some of the bile back into her stomach, which we can do through her feeding tube. If this helps then this could be remedied at home.
Pretty eventful day. To top it off, we had a quick conversation with her GI doctor and she gave us some detail about a meeting we will be having tomorrow. We knew that they were talking about re-listing her for a liver. While know her current liver has issues but, we have concerns about what state Afton will be in by the time a liver is available. She told us they are working on a case to request higher priority than her liver labs would actually give her.
Not sure what will happen with this but it sure feels good to have a group of doctors that are strong advocates and willing to fight for our girl. We will post more when we learn more which will hopefully be tomorrow.
