Update from Barb - 9:30 PM Wednesday

[Guest guest]

Ken got back to his room around noon, and slept off and on for several hours. When TJ came, he rubbed Ken's sore shoulders, exercised his feet a little bit and coaxed him to eat a little food.

A Respiratory doctor came in & talked to us about Ken's chest X-ray. He has a pretty big (2 liters!) pleural effusion (fluid in & around his right lung) and Ken is using only half of his lung because of it. This certainly explains why Ken couldn't lay down for the CT and why they had to knock him out before laying him down for yesterday's surgery! So tomorrow, once again, Ken will go down to the 2nd floor and they will insert an intercostal drain (port/catheter) to slowly remove the excess fluid. Ken wondered out loud how will he walk around with so many tubes and drains. We'll manage, I told him.

I have to wonder how much more his body can take....... But I also know there is probably more trouble brewing. His white cell count came back HIGHER today! The Respiratory doc told us it has everyone stumped.......

Barb

[Guest guest]

Has anyone tested his immune system ?? Maybe a long shot but could be

contributing to the severity of Ken's problems ?? We have recently

found out that my son has a genetic immune deficiency his B cells and

his T cells are not functioning well and there is a VERY strong link to

liver problems and specifically PSC with combined B & T cell disorders.

The immune deficiency can cause all kinds of puzzling and seemingly

unrelated problems including repiratory issues... so maybe ??? it

would help Ken to have some immune function testing ???

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

> there is probably more trouble brewing. His white cell count came back

> HIGHER today! The Respiratory doc told us it has everyone stumped.......

>

> Barb

>