29. New Life

Aug 25, 2011 - Thursday
Scott was off the vent for 7 hours! His writing is 90% understandable. I get better at reading his lips.

August 26, 2011 - Friday
All day off the vent. His writing is solid. He also can whisper. He sits on a chair for an hour which wears him out. He feeds himself a whole carton of jello, brushes his teeth. He hates nights. He can't fall asleep. When they give him a sleeping pill, he falls asleep for an hour. Then they come back in, turn on the light, check his vital signs leaving him groggy, uncomfortable and unable to go back to sleep.

We talked to kids on the phone today, it's the twins' second Birthday! They had a great day. In the morning they had a breakfast of birthday chocolate cakes made by Nadia and her friend Maggie Metzger. I wish I was there to see my babies looking at those cakes mesmerized, then poke them, then destroy them! At 5 pm there was a bbq birthday party thrown for Ethan and Levi by our Garmisch community folk. Lots of people, lots of food, lots of presents under one of the many gigantic pine-trees in front of our apartment building. I bet my family felt so special! My friend Lena Volkova (who flew to Garmisch the day before the party to stay with my Mom and help) was so impressed by solidarity and service rendered to our family. So much love! How can I ever thank them fully? They were amazing! Thank you, my Garmisch friends!

Scott was in really good mood today. He had Steve take pictures of his stick legs and arms. They even made a video where Scott said: "This.. is.. what.. Ironman.. does.. to you," in his hyperventilating Darth Vader whisper. Then he shook his head and went: "All that training..." He seemed to start accepting the reality of his new life. I can only imagine how he feels now having lost so much of his strength. But if he is the same Scott I knew before June 26 of 2011, he'll build himself back up. First, mentally and spiritually, then physically.

August 27, 2011 - Saturday
Scott was off the vent the whole day and the night before. He was in a chair when we came in yesterday. He looked exhausted. He said he had a terrible time catching his breath, he was asking for help. The numbers on the screen looked fine, so the nurses did not rush to his rescue. He kept on leaning forward, resting his head on my shoulder and trying to get enough air. My heart ached for him, I could not bear him being so uncomfortable and kept on asking nurses to do something. Namely, hook him back up to the ventilator. It took awhile before nurses could fetch the doctor who would have to give it a go. Doctor explained that Scott was doing incredibly well and this discomfort is due to his weakened chest muscles. But if he wanted a break, they could hook him back on to the machine. So, we asked for a break. As soon as the ventilator was back on, Scott started coughing and choking. His face cringed with pain and discomfort. I panicked: "Is it worse? Do you want it off?" He nodded between his coughing fits and I asked the nurse to stop the ventilation in my most assertive French I could come up with. They turned it off and Scott was relieved. It was intense.

Later, he was transferred to bed (not an easy task for a female nurse, so I stuck around to help) and had a short nap, half of it on his left side (another new trick, 'cause before he could only be on his back.)

He was quiet the rest of the day, staring blankly into his 17 Again movie. Cute show!

At night he became more talkative, mainly demanding. "Rub my feet, I'm cold, Soup too yucky, Lay me dawn flat, Sit me up.... "If only he knew how happy it makes me to hear his commands, accompanied with rolling eyes and annoyed expressions. I told him I loved him soooo much!  He said: "Even in my skeletal shape?" I said: "Even more so!"