It looks like Parker will be coming home Thursday or Friday. It has been really confusing- everyone had different opinions- whether the nurse or therapists or doctors... And poor Darrell was here on Friday while I was home sick and had no clue what was going on and everyone kept telling him different things and I had NO voice... But all is lined up now and we can move forward with that date.
I am so relieved. At one point we thought they were sending us home today and I felt a little kicked out because there is still so much to do and learn with the G tube, but that was just a misunderstanding and all is well.
So one little known job position that I am forever grateful for is the case manager at the hospital. Ours is amazing! She coordinated everything with the insurance all along giving then weekly updates so they would authorize more therapy. Today she handed me a paper with all of my follow up apts with my pediatrician, Opthalmology, neurosurgery and before we leave that list will include any out patient therapies as well as all of my follow up apts with rehab for the next several months. Plus she takes care of the referral for CCS plus so much more. Wow. I really really appreciate her. I appreciate this whole rehab team. They really are a team and they are amazing.
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