Update 6:00 PM - Prepping for Surgery

We've had some generally good periods - hurray!!

He's definitely more alert and getting closer to his old self all of the time. He's moving a lot more, he's doing more self-soothing (clicking his tongue), wiggling on to his back (he's supposed to remain on his side and protect his 'new' head, and smiling - FINALLY!! Our sweet boy is finally smiling again.

Again, one of the many sweet nurses (Roni) who help love and tenderly care for Cole

He's still in some pain when you pick him up, or more precisely cradle his head. Besides being miserable he gets so upset that he will cry out without crying in -- more breath holding, including turning dusky and even bluish. We blow in his face, tilt his head, all of the things we can think of - including threatening to hold any allowance in the future. He'll take some time (generally too long for anyone watching). I spoke with the neurosurgeons so they could start addressing it now or during surgery. They ran a number of tests and a handful of labs. Meningitis was mentioned, but luckily ruled out after the labs. They found some additional blood in his head where it shouldn't be and believe the problem may be related to too little pressure (overdrainage ... the problem that caused the need for this surgery to begin with). They've turned up the pressure so he'll retain more fluid, protecting that beautiful head. It appears to already have had an improvement today. We'll continue to monitor it. Where he was on a mix of morphene and loratabs, we've been able to take him down to motrin and tylenol. Will see if it lasts during the night, typically the hardest time for him

We're slated for surgery on Wed morning to reinternalize his shunt. Good news they're going to use the same valve (programmable) and install it in the same place. That's helpful given there are already 'tracks' so hopefully minimize his head / skull / etc. dealing with this foreign object and finding it's place. We know what pressure he was on -- it's amazing to realize we have committed to memory the shunt type, manufacturer, setting, etc. -- all of which should help with the installation. Surgery should be relatively short and since already has a PICC line (as long as they remains functional, they'll probably be out of surgery in about 2+ hours. He'll spend some time in recovery and then secluded for a few hours and then probably back to his room to recover. That's the plan ... everyone say it with us so it all comes true. :-}

A big yawn from the big guy - it's wearing all of us out

We will keep everyone up to date on the progress as we see it. As always, thank you for your prayers and good wishes. They mean so much to us.

~Thanks again to Grandma who took some pictures for us since we were without our camera earlier this week. ~