Perfect Faith

"Still perching there, ready to take flight. Thinking grand thoughts of the new journey about to begin."
~BigD

This little fellow reminds me of the hummingbird calender that Nick has hanging in his room. Every day or so we change the page so Nick can have a new picture to enjoy. It is never on the actual month so everyone keeps trying to put it back on August.

Something to share...you know how you go in places like Cracker Barrel or Hallmark card stores and they have things with people's names and what they mean? Well I hope so because I have two cards with the name "Nick" on them. I just really like what they say and so I wanted to share them with everyone. The first is "Nick" from the Greek root Nicholas meaning "Victory of The People. Then it gives this description, I highlighted my favorite part:

"A frank person; someone who is shy until he gets to know you; he is proud of his old-fashioned ideas; can be lovable when he wants something; solid and real; has a divine nature; thinks for the benefit of the world; his reward in life is those around him." So true!

The second card has the following Bible verse: "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles." Isaiah 40:31

Nuts & Bolts of Monday...
a) Nick remains heavily sedated. Plan is to keep him this way in the short term in order to do more tests. Doctors are trying to figure out what is going on with Nick's lungs.
b) Nick's VS have been stable and his numbers continue to look good, despite the continued poor status of his lungs.
c) Nick ended up getting his trach tube changed out at the bedside (long story). So now he has a #8 trach tube. So far it hasn't helped anything.
d) Had a big meeting with the doctors, nurse from palliative care team and social work. The main thing that was established was that the doctors are not giving up on Nick. They are very concerned about these latest developments and want to do everything in their power to find what is wrong and try to fix it. Given that Nick has no leukemia and no GVHD right now, they want to be sure to give him every chance to "bounce back." So for now we are in limbo...it was also discussed that communication between us and the doctors needs to be better. (Understatement of the century).

Thank you to everyone for your well wishes, prayers, and words of support and encouragement. It is good to know there are so many people out there pulling for Nick. It means so much to us.
Please keep praying for the miracle that we need. I am trying to find solace in the fact that while sedated Nick is not suffering, but I miss my Nick and I want him to be able to come back to us soon. I miss his smile and I miss my "I love you Mom."

“The reason birds can fly and we can't is simply that they have perfect faith, for to have faith is to have wings” James Matthew Barrie