Dancing on Thin Ice: Endure To Conquer

Each day has an ebb and flow. Today was calm like the small waves that lap at the sides of a boat moored in shallow water.

Nick & I journeyed to Hopkin's for our third time this week. We had a long discussion with the charge nurse...lots of venting about frustrations, power plays by nurse practitioners, our feeling that we would not be lemmings in this sea of humanity that apparently has drunk the Kool-Aid and cannot muster enough energy to get up and go home. We came to the conclusion that things have not been up to par in terms of the communication between Nick, myself and the staff. A plan to address the issues was formulated.

In the meantime, here is an update on Nick and other random factoids.

1. Nick is still being treated for acute graft vs. host disease (I hate that word!)
2. His liver enzymes were all elevated at one point, however, the stubborn ALT was up the highest to 838! (High normal is 40!) FINALLY, all of the liver enzymes have started to slowly come down, although they are all still out of normal range on the high side. This is a gradual process, but, at least the values have started to move in the correct direction.
3. Nick continues on his mega doses of steroids and his anti-rejection drug, called Prograf. They increased the Prograf dose a few days ago due to his level being low and perhaps this has been the thing that helped the numbers to go down.
4. Nick's bilirubin is also high. The bili is also a reflection of liver damage/function. So the doctors are watching this one too.
5. All of Nick's other labs have been looking good. He has been very stable with his counts and has not required any kind of transfusions since he was discharged from the hospital.
6. So far Nick has been "infection" free!!! No fevers or other problems. (KNOCK ON WOOD)
7. Nick has the "moon face" look that comes with high dose steroids. The steroids can also increase the appetite. Nick is eating all the time since his steroids kicked in...I hope this keeps up, because he needs to gain weight anyway.
8. Today we got lunch and walked in the mall for exercise. Nick still is way down on his energy and endurance; and the steroids actually make him feel like he has a lot more energy than he actually has. After one lap and a set of stairs, Nick was tired and said his muscles were weak so we hit the Cinnabon and then headed for home with our calorie-laden Cinnabon's in hand.
9. We moved over to the HIPOP side this week. Nick had Flo for is nurse. She is really great and actually examined Nick and spent some time with him. She actually changed his dressing on his line twice this week, without argument. It's a MURACLE!
10. Nick has felt better this week than any time in my recent memory since his BMT. The weekend is Nick's time to relax, see Kate, and chill. This is always a much needed break (for both of us) to catch up, recharge and prepare for the next round. Talk at ya soon. Peace.

“Perseverance is a great element of success. If you only knock long enough and loud enough at the gate, you are sure to wake up somebody.”