My Whole Being Waits

We have adjusted to in-center hemodialysis for the most part.  It's hard to believe that six months have passed since we switched.  We have grown to appreciate the nurses and techs who take such thoughtful care of Jason. When he first started on the nocturnal schedule, he was on treatment for eight hours from 8pm-4am.  We were eventually able to request an earlier time, so started going from 6pm-2am.  Since his labs were always good, they ended up cutting his treatment time to seven hours.  We initially chose nocturnal dialysis because patients generally feel better when fluid is removed more slowly.  It was my hope that Jason would sleep through his treatment, so the time would pass more quickly.  He still hasn't been able to fall asleep at the center.  After talking with his doctor, she thought Jason would continue to do well on a shorter treatment time.  This week we decided to switch from nocturnal, and try a new schedule.  He's now going from 5pm until 8:30pm.  He seemed quite pleased to learn that he would be going home sooner.  I'm fairly certain that school mornings will be less blurry for me as well.
We went to KU last Tuesday to finish updating Jason's tests for transplant.  He'd already been cleared by cardiology after recent extensive testing.  When we went through this same process in 2013, they approved Jason in all areas except weight.  They'd placed him on hold on the transplant list until he lost the weight he'd gained from peritoneal dialysis. Since switching to hemodialysis this past April, he's already lost nearly fifty pounds.  Because of this, we were extremely hopeful going into the appointment last week.  We were certain we'd conquered the last hurdle in his way.
We spent the morning in a series of appointments before his labs and scans.  Once again, we met with a social worker, pharmacist, financial advisor, dietitian, nurse practitioner, kidney doctor, and transplant coordinator.  It felt like a simple review of information until we met a different kidney doctor, who hadn't seen Jason previously.  She had many questions regarding his hospital stay in 2008, primarily the blood clotting disorder which was diagnosed at this time.  She also expressed concerns about his short-term memory loss since he'll need to take anti-rejection pills daily.  I assured her that I've effectively managed his medications for the past seven years.  She told us she wanted to further study his medical records from 2008, as well as speak to his physicians from that time.
The transplant team normally meets every Wednesday to decide which patients to list for transplant. Yesterday was long while waiting for a phone call.  Today was longer still.  Finally, this afternoon I decided to try an email since I couldn't imagine not knowing all weekend. I received a reply that said his transplant coordinator had been out of town for a conference...so they didn't discuss Jason this week. It went on to say that the meeting for next week is cancelled. So we shall hopefully have news sometime in October.  Sigh.  

"I wait for the Lord, my whole being waits, and in his word I put my hope." (Psalm 130:5)