So we got to return home on Nov 25th. It has been so nice to be home! We had a very nice Thanksgiving. The whole week of Thanksgiving felt like such a nice holiday. On the following Monday we had a cardiology appointment which was just a quick follow up. The next day we had an appointment with our oncology doctor and we had fun seeing all of the great nurses at the clinic. But at that point there was some concern about Mia's potassium and sodium levels. So we were back the next day for three and a half hours. The doctor was concerned enough about her levels that he arranged for us to see the pediatric nephrologist the next day. Boise does not have a pediatric nephrologist so one comes from Portland once a month. He just happened to be coming the next day. The visit with him was uncomplicated and quick. He was fine with what was being done and just wanted to follow up with her in a month.
Then a couple of days ago, I noticed Mia's belly seemed very bloated. She had also been sleeping a lot. So I took her in.
She had pneumonia and the doctor admitted her. Apparently there is nothing wrong with her abdomen other than that she is retaining fluid. So Mia was dehydrated when we brought her in. I think she had been getting slowly worse for a while. She is most likely retaining fluid because her kidneys are not working to full capacity. So they are not ridding her body of the extra fluid. This is something caused by her medication, cyclosporine, and exacerbated by her dehydration. Hopefully added medications will help her kidneys continue to function until she is able to go off the cyclosporine in about four months. St which time her kidneys should recover most of their function on their own over time. However she may have some permanent kidney damage.
So I just got a call from her cardiologist. She had an echo this morning and it looks like the function is very decreased. So they are going to start her on an IV drug to help restore the function. The drug can only be administered in ICU. So they will be moving her shortly and we won't be headed home tomorrow like I thought. Don't know yet how long they will want to keep her. This feels a little like deja vu since ICU is where we were at the same time last year.