Yesterday

Clinic went fine.  All is status quo, which is great because we don't want Shelby to be worse.  BUT, as my friend Moreena commented on Facebook "Glad to hear it went well, although status quo can be a hard place to stay when it's not a good long-term solution."  She hit it right-on.  This is not a good place to be.  The doctors thought Shelby looked fine for a kid on 4 liters of continuous O2.  They got to see just how low she drops when Scott took her to the bathroom and we could hear the oximeter alarm all the way down the hall.  When she got back she was at 80% and that was on the O2 :-O  They all agree she has some fluid in her legs and her weight was up about 5 lb from what I'm getting here at home.  So, there's probably general over-all fluid retention going on.  They want to see her back in 2 weeks for an echo on her heart.  This will tell us if the chronic low O2 levels are putting a strain on her heart or not.  One of the things they'll specifically be checking for is pulmonary hypertension.  Also, we'll be seen in clinic again.  Her labs looked pretty good.  For all you liver friends out there, they are:  total bili=1.3, direct bili=0.4, Alk Phos=368, total protein=6.3, ALT=40, AST=60, PT=14.7, INR=1.10, PTT=29.7, wbc=3.37 (that's really good for Shelby), platelets=92, hemoglobin=13.9 and hematocrit=39.3.  


Hopefully we'll hear word from the person who was worked up to see if they're compatible to be Shelby's living donor.  Hopefully what we'll hear is that they are a match. If not, the next person gets tested.  Hopefully, we'll get THE CALL first.  We do lots of hoping around here.


Here is a picture of Shelby and Dr. Jill from yesterday.  I ran into Dr. Jill in the hallway and she had time to stop in for a few minutes.  Shelby was thrilled!  :-)  Also, the guys from Snow City Arts came and hung out.  They are always great to see!  Shelby is still working on projects with them and they had me fill out a form to see if she can get school credit for the work she has done with them.  Very cool!

Sorry, this was taken with my phone.  Apparently it could not handle Shelby's white sleeve and the white sheet on the table together.  Shelby does have an arm there :-)