I am sorry for having no word but for our Dylan. I find myself doing things that (were I not going thru this) I'd consider outrageous. I began taking pictures of him...he's already lost three days, I think. What if he needed to know what had happened? Well, there was a way for him to know (the thought came)...I just asked the nurse for a camera, and the camera appeared.

Today I found out that for PICU families there is internet and food, and digital cameras + all sorts of media available gratis.

I keep writing because all I can think is I need a witness. For him...that's all, man. I need a witness.

I am so freaked that he will be conscious while tube is there....soon I go again to spend the night.

This is a copy of the update I sent this eve - of course to all here reading as well.

-Donna

............................

Dear All,

We are humbled and so grateful for your prayers and support.

The news is better, yet hard.

Dylan is in his 3rd day in the Pediatric ICU. The PICU doctors said that he'd "turned a corner" yesterday, July 5. MD's are hoping for continued improvement, but expect this will be slow. It is still day by day as to whether the breathing tube will be taken out. As of noon today he was on 40% oxygen. They are turning down the pressure ever so slowly, confirming blood gas levels, and if stable, keeping him there for hours more, then deciding if a little more can be turned down and the whole process repeated.

The suctioning of chest secretions continues every 2-3 hours (as of noon today).

The tube draining matter from Dylan's chest is to be removed very soon, this day yet if possible.

Which is good, but that means the next step: to take him off the paralytic drugs. In addition to full sedation and pain control (morphine), they've kept him paralyzed literally. Once these paralytic drugs are removed he will be able to wake up, albeit quite disorientated, but still knowing the tube is there - because the breathing tube must remain (we heard "Sunday" for possible removal). It was frightening to find out that he'll be conscious in some manner while the br. tube remains.

OTOH once he is not paralyzed, his own cough production will be more effacacious re: secretions than will be suctioning. And other good things.

One of the BP meds has been removed (epi) and the dopamine they are weaning him off of. All good!

But it's confirmed the pneumonia is in both lungs. Particularly sobering was current PICU doctor telling us today that recovery prognosis at this point is in terms of "weeks and months...perhaps a year before he's fully" restored.

"I would love him to prove me wrong!" Dr. Hahn added.

~Again, your support is everything to us right now.

Gratefully,

Donna and _____