So we made it home from St. Louis as planned.  I went straight into working the weekend after we got home, and have also worked extra shifts since.  The hospital is VERY busy with influenza patients.  I've barely had time to get online since we've been back!  I'm actually updating from work today, but I promise to upload new pictures soon.

The final report from Amber's bronch and BAL is also negative for rejection and infection.  What a relief to have a clean bill of health from her lung standpoint!  I'm not sure when we will go for her next eval, but I'm requesting that it be in 1 year, so long as there are no changes in her condition between now and then.  We'll see if my vote counts for anything. 

So Monday, we had a follow-up ultrasound of Amber's abdomen to check on the status and size of the fluid collection (also known as a pancreatic pseudocyst or walled off pancreatic necrosis).  It's gone!?!?!  We then had an appointment with Dr. Fridge yesterday to talk about the new plan.  Both she and I were astonished (delighted, but astonished) that it was completely gone already.  We had thought it would take a few months to go away.  Amber has had normal pancreatic function for two weeks now.  Dr. Kozarek, the doc in Seattle who did her ERCP and stented her pancreatic duct, had wanted the stent to be removed when that fluid collection was gone.  Amber has had such a busy go of things lately, we decided it would be best to wait a while.  Dr. Fridge was going to check with Dr. Kozarek but she said she thought that would be an ok decision.  We're going to start trial feeds next week if her labs tomorrow are normal again.  Dr. Fridge thought that getting her to a point of having gut feeds again would be a better first step.  We can go in later and pull that stent out.  We'll likely trial feeds very slowly, advancing over two to three weeks back to the same calorie intake she had before and allowing some recreational/social oral feeding as well. 

There is a possibility that Amber won't tolerate the feeding.  Dr. Fridge says the area that was torn, was not able to be reached completely by the stent, so there is a possibility that feeding won't work.  I asked her if the plan would be permanent TPN if that were the case.... She pointed out that her pancreatitis episodes were getting more severe, and that TPN might be quite inconvenient for us and Amber, but it is a much better alternative to hospitalization and pain.  I do agree, but....well....it just plain sucks.  Let's hope Amber surprises us again and tolerates feeds.  I'm hoping for an uneventful year this year.