Jim and I met with some of the various groups of people taking care of Rylie today to try and get a better understanding of what is going on. While everyone was helpful there appears to be many different theories and ideas on how to treat Rylie. Because there are other underlying issues with Rylies health we are dealing with so many different doctors. There are so many different teams of doctors who specialize in different things here at Children's it is amazing. The pain management team want to be sure she is being given everything needed to ensure she isn't in pain, which is their objective. However, the heart doctors don't want to over medicate as this can affect her breathing which affects her heart, which is their focus. Then there are the ICU doctors who are here with her during the night when she is miserable and they want to make her comfortable which at that moment is all our objectives. The end result is Ry is going to remain in ICU until this can all get resolved which we are happy with. THis way she has a nurse who just focuses in on Rylie.
Today Ry slept most of the day and Jim and I are praying that doesn't mean we are in for another rough night. If we are.....we are and there isn't much we can do about it right now. We are just really tired and would like to get a solid few hours of sleep. It is amazing how lack of sleep can affect everything especially your coping skills.
We had a nice visit today with Grammy, Auntie Joanie and Auntie Barbara. My dear friend Beth popped in for a few minutes too which was so nice. To my fellow team mates at work......THANK YOU! The care package you sent for RY was such a sweet thing to do. You guys are amazing and I miss seeing you at work.
I will update tomorrow.
Again....thanks for all the great messages.