Friday, 10/28/11

We apologize again for taking so long to update, we will get back in the groove but this week has been extra busy! Last weekend and the first part of this week were pretty rough. Wednesday night was especially difficult, Forrest's responsiveness had declined to the point where he wouldn't track us with his eyes and definitely wouldn't give us thumbs up or really any response at all. We met with his Attending yesterday and he helped lay out a plan. Give Team Forrest any plan and we are good to go, we will go out and tackle it. It's the stasis and waiting without a plan that we aren't good at.

We've begun to do small hourly drains of CSF, to reduce the amount of fluid in his ventricles, and that has seemed to help. He is more alert and tracking better since Thursday morning when we started. Yesterday he gave Maylin and the day nurse a thumbs up, and today he gave a brief smile while we watched the fan favorite, "Super Troopers." He's doing much better tracking and paying attention to what's going on in the room yesterday and today.

We're taking each day at a time, as always, and today was better than yesterday. Forrest received an amazing and blindingly bright gift from Karen and the rest of the Dolphin Quest Virginia office, a beautiful hand made blanket with lots of bright colors shown in the pictures below. It warms up the whole ICU room! Thank you so much!

As far as the next steps of the plan, the head Doc is looking at putting in another shunt (same model as last time) as early as this Monday. It will allow us to once again control the pressure in his head, the same role that the Extra Ventricular Drain(EVD) is playing now, but the EVD, because it is external, carries a greater risk of being a vector for infection to follow into his brain. Putting in the shunt again will allow us to remove the EVD. The plan is still evolving for when we would put the cranioplasty back on, likely several months, in order to increase the chance of avoiding yet another devastating infection. In the military, they often wait 6-12 months, but in his case, because it is such a massive craniotomy, we want to minimize the effects of atmospheric pressure pressing down on his brain that occurs when it doesn't have a skull or prosthesis to create normal pressures. But like we saw before, we can and WE WILL make progress without the prosthetic. Maybe even coming home by Thanksgiving or Christmas, but all plans are moving targets, as we well know.

Thanks for the comments, you all are amazing and cheer us up and keep us going every day! Here's a quote I came across, it's kinda whimsical. " If you aren't in over your head, how do you know how tall you are?"

Love,

Austin and Team 44

Rebekah and Forrest with hand made blanket from DQV

Forrest and I watching videos from his friends