The Hail Mary

With the stress of being at home and constant IVs taken away, today is a little better.  Graham is still unable to move much, but he has been talking more and has eaten a little.  It's not that he didn't want to be at home, he just felt he had to do more.  And with me back at work, he became anxious and stressed.  Not a good combination.

During Photopheresis yesterday, Dr. Rosenblatt came and paid us a visit.  Either treatment is not working, or it is working too slow.  His rejection has obviously progressed in the past 2 weeks and it is not looking good.  So Rosenblatt is throwing a Hail Mary.  He wants to give Graham the strongest immune suppressant they have.  This will drastically suppress his immune system and the hope is that his body will no longer be fighting to get rid of his lungs.  The risks are huge however; if Graham still has an infection (which he most likely has) or gets an infection (which we have a 7 year old), it will take over his body and kill him.  But as Rosenblatt said, it is our last resort.  A dear friend wrote, "We may be at the "Hail Mary" shot, but there is a reason why the term exists."  If Rosenblatt is the star quarterback, Graham is the star receiver.  Both have fought these horrible odds before and both have won.

Dr. Rosenblatt will also be speaking again to Dr. Mason, the lung transplant surgeon at Baylor, to see if he will reconsider transplanting Graham.  He is the one that originally denied the retransplant because of vein access.  Now that it is known he has access through the groin area, maybe he'll ok it.  He will also be speaking with Dr. Torres at UT Southwestern.  He is the "Rosenblatt" over there.  The worry with him is that he didn't want to transplant Graham 5 years ago.  Luckily, Rosenblatt moved to Baylor and we have had the most wonderful and blessed 5 years because of it.

We will see.  We both still have faith, but the ulcers and stress until the good happens is hard.