Care Conference

The experience of being in an ICU unit has many unique qualities.  One of these is that the less interested people are in you, the better.  Being popular and interesting here is not a good thing.

As we sat in our second formal care conference today, we certainly felt less popular and interesting than last week.  Jordan continues to be unique, which means his reaction to the infusion remains an unprecedented mystery, but our team of concerned physicians shrunk to nearly half the size.  We hope that trend continues.

At this point, Jordan remains stable and is clinically improving.  The care team's update confirmed what we have been hearing daily: that renal function shows no sign of improvement; liver function continues to improve and the liver is still producing clotting proteins; the acute hemolysis appears to have abated; and Jordan will likely have an MRI some time next week.  We asked to have the MRI team look for ear canal structure at the same time they look for bleeding on the brain to save Jordan additional tests in the future and were told the team will try to make this work.

While the doctors still don't have any idea why Jordan's body reacted so significantly to the infusion, the current theory remains that Aaron's cells were so well primed to attack Adenovirus that they released a huge level of hormones that caused Jordan's body to shut down.  Doctors also have no additional answers as to why Jordan's kidneys stopped working.  One idea is that the Cyclosporine Jordan is receiving to assist with engraftment can impact renal function.  To rule Cyclosporine out as the cause of renal failure, doctors want to do a bedside kidney biopsy if attempts at "kickstarting" the kidneys (by allowing Jordan to retain more fluid) are not successful next week.

As for engraftment, early tests showed only the CD8 T-Cells as "new" in Jordan's body.  Other necessary signs of engraftment may be more apparent through chimerism studies (named for the Greek Chimera which is a composite of a lion, a goat, and a serpent), the first of which is due back Monday.  This study uses STR analysis (the same process used for a paternity test) to determine whether Jordan's body is all Jordan or is a composite of Jordan and Aaron as we believe.  Apparently the study at 28 days will be a much more conclusive indicator of engraftment success.

We are indeed grateful for our wonderful care team here at Seattle Children's.

After the meeting, I was blessed to spend several hours cradling Jordan in my arms.  Jordan had been only able to lay on a pillow on my lap but today he lay in my left arm with his head against my chest, watching me intently with his yellow and red tinted eyes.  Every few minutes, he reached up with his left arm to explore my face and remind me that he is learning from me as I am learning from him.  After a while, we both drifted off to a restful nap--confident that neither of us would let the other go.  What a gift it is to be a Father.