day +153

It is weird how procedures like surgery to get a central line in and out (which comes out her chest and goes into a big vein close to her heart),being sedated to get a picc line in and out (which comes out her arm and goes to a big vein close to her heart) is routine for us now. She got her picc line in and the first thing she noticed when she was awake is that they put it higher up her arm so she can bend it! We are excited about that. I wish that every picc line we have gotten was like that.
A lot of things are oddly routine for us. These are the two we dealt with this weekend. I thought of this because I was alone for this procedure and the nurse said in the O.R. when chloe was done,"Mom and dad can come back and the rest you can send back up to her room." And I thought, the rest? Nurses just say this day in and day out, so on our way up she asked if the rest of our family was waiting in Chloe's room. At first we both tried to be there for everything, but over the years there are just so many appointments and proceedures that we just can't both be at every one when we have 3 other kids to take care of.

Sooo the second virus she has is very uncommon. So uncommon they didn't even know how to pronounce it so I am not even going to attempt it. They said they have never dealt with it before, so they are finding out what meds to send her home with since she hasn't had any fevers. I was going to have them write it down for me but they had a hard time pronouncing it I didn't think they knew how to spell it. We have some blood orders and then hopefully once they figure out the drugs to give her we should be outta here!