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.
 Love,
 Grammie Jen

Oh how I wish, all our love could make them both happy and better instantaneously. I wish we could smooth her way to recovery so she can thrive the way she is trying to do it. I am sending tons of love and hugs this way and hoping with all my heart that things get better.
ReplyDeleteMy thoughts are with all of you.
ReplyDelete