0620 CDT update from Barb

[Guest guest]

During the night - Ken decided to spike a fever (without his mother's

permission, I might add!) It isn't high, but enough to keep his nurse hopping.

He's going to be mighty upset when he wakes up and realizes he missed this cute

young thing taking care of him. Sara Ann (aka CYT - cute young thing) gave him

some Tylenol (that even feels strange typing it, after all these years of

avoiding it) and his fever came down. Happy mom & CYT.

Not one to let us rest, Ken decided to have trouble breathing. So, CYT decided

to try an oxygen mask. It didn't seem to be making breathing any easier for him,

so CYT decided to call for reinforcements and second opinions. At 2 am, and out

of no where, comes 6 more 'on call' nurses. Now it's 8 women and Ken, boy is he

going to be sorry he missed this! They huddled and muddled and decided to put

him on a 'Bi Pap' machine. Bi Pap stands for Bi-level Positive Airway Pressure

it's a breathing apparatus that forces air into the lungs and it aids

oxygenation and ventilation and provides non-invasive pressure support to his

lungs via a special nasal mask. BiPAP prevents the more invasive procedures of

intubation or tracheotomy. Ken finally seems to be resting a little easier.

They've taken blood several times during the night, took another chest X-ray and

a few minutes ago another ammonia level. The lactulose hasn't started 'working'

yet.

That's all the news from here. I'm REALLY looking forward to rounds later this

morning and getting some answers. Or, at the very least, a plan of action.

For those so inclined - please pray for Ken and his donor family. Thanks so much

for caring.

Barb

[Guest guest]

Dear Arne,Yahoo might have the hiccups but it was almost like a warning bell.We need a better treatment for PSC to prevent the need for transplant !! We all need to realize the crisis we are in so that we can work for the solution that I know is out there.I feel like too many think that transplant is the answer rather than a better treatment.I am praying and wishing and hoping for Ken and Barb.I just wish they didn't have to be where they are at all.So, Ken's situation will spur me on to work harder on the fundraising for research.LeeI'm also praying for those generous enough to be organ donors who give the gift of life .They give us the time we need to accomplish new goals of new treatment.