The family meeting was today and had lots of info and mixed feelings. The therapy was a great report as expected but the medical side had the same issues that we have been dealing with and how they would rectify the issues. The doctors are at odds as to their methods. Kaiser wants her there for any medical issues which mean that she has to go back to ICU and lose the aggressive therapy that they are doing at Children's. They don't have the same philosophies. The ICU docs are great but just want to keep her on the high vent settings that are safe and not push her at all. The rehab docs want to get her off the vent and move forward. It is a real dichotomy! They are trying to figure out why her red blood cells don't seem to be getting better - she has had over 6 transfusions at Kaiser and is close to needing another one tomorrow. They know she is bleeding in the gut but not a ton and they are constantly drawing blood, which shouldn't be that much but who knows? She has another fever and Carrie says she knew that she wasn't great for the past two days, but feels that it is probably viral again and they do all the tests and then she is fine for another week. It is definitely crazy. Both my girls are having a very hard time. They can't let her sleep a solid amount of time as the vent needs suctioning and such so they have to keep waking her up - I swear that that gives me a fever!!!
I sure hope that we can stay and move in a
forward motion. She is trying so hard and just seems to be hitting
these bumps. Carrie is having a terrible time with all of this! Glen
went home and Carrie will be sleeping under the sink for the next couple
of nights. Terry is talking about going over to relieve her on Friday
night so she can go home. We will have to see. Unfortunately my Carrie
is having a very rough time in deciding what to do and how to handle
it. She needs giant hugs and prayers right now.
I love each of
you and appreciate that you read and try to understand my crazy
ramblings as I try to make sense of the senseless! We need and
appreciate all that you do.