Update - Saturday 5/8 @ 11am

Kristian slept well overnight and I am not sure if it is funny or sad to see him point wildly (since he still has all the tubes in his throat, mouth and nose) and everyone wonders what he wants until you ask him "do you need to go to the bathroom" and he nods his head with a vigorous "yes". He can't seem to figure out that it is okay to not actually get out of bed and go to the restroom for the time being but we are getting by.

So this morning started with another collapse into the realm of low oxygen levels and the ICU staff has decided to basically throw the textbook out when dealing with Kristian because the SOPs don't seem to work with him. This has taken us to a whole new area where the lung specialists are now somewhat "arguing" with the heart specialists as to what exactly is going on in this little boy's body. What does happen is that when he gets agitated (a new needle, a coughing spell, a large change of position, deep suction, PT, etc) he cascades into a low oxygen, hyperinflated situation that squeezes his heart which snowballs the whole shebang into a larger problem. The thing that seemed to help the most was beating on his chest with a covered rubber mask (he seems to like this).

The new plan is to get some ultrasounds to have a new look into his chest and heart area (and not turn him into a little Cherynobl with more xrays), stop several of the medications that he is on and start letting him do more on his own. Case in point, he went from an pulse Oxygen level of 65 to 97 in the span of 10 minutes (at 100% o2) and stayed in the mid-high 90s with an immediate cut to 50% o2 (so the problem is not in the amount of o2 or the pressure that is getting to his lungs, it is his ability to absorb the oxygen once inside.

This should be an interesting weekend. While we may be out of the forest we are still in a thicket (or a cave) and there is much work to be done. Keep the prayers coming.

Doctor quote of the day (so far, its only 11am): "He is an enigma of an conumdrum of an illusion."

Hi Kristian,
I hope you feel better. I want you to come back to school. I miss you and I am thinking of you everyday!
Love, Anabel

Kristian said to say hello Anabel and he can't wait to see you (and everyone else) very soon.

Jenna - to date, they have been unable to acertain what exactly is doing this to Kristian other than "some type of virus"

And just as a quick update, The Heart Specialists have won the first round by ruling out any kind of shunt or other vavle (hole) problem with the little guy's ticker. The ball is back in the lung specialists court.

Good Evening;

We are thinking of all of you, with much care and concern. Our thoughts and prayers are with all of you at this very difficult time.

With Love,
Deane and Tony Petzel