Friday, November 20, 2009
Another pretty good day. A few bumps in the road, but hey, what are a couple of small bumps compared to the hurdles Big Kid has already overcome?
I left a message for his neuropsych about how best to deal with the "lost time" issue, and he called and spoke to Hubby while it was my turn at the care center. Apparently his on-call doctor 2 weeks ago didn't bother to notify him that his patient was in the ICU, so he had no clue of what's been going on for the past 4 weeks. Needless to say, he was shocked and more than a little ticked off.
He told Hubby that we need to get the boy oriented to time as soon as possible, and to start introducing it as gently and vaguely as possible. Such as, "you've been in the hospital for quite a while", etc. He's going to work with Big Kid's new primary doc at the care center in case any more issues start popping up.
Our son's wide awake now. He lit up like a lightbulb when I first came into his room.
"I love you" he mouthed.
Oh my boy, my heart, I love you too. You have absolutely no idea how close we came to losing you.
He has pronounced fine motor deficits. It could be residual sedatives and stuff, or just because he's out of practice from being sick and sedated for so long. It's too early to say for sure. When I got there, he was trying to write on a clipboard, but was completely unable to. He could, however, point to letters on a board so I could write them down. (He can SPELL! He can SPELL! Hallelujah! )
The first word he spelled out was "Bette".
"Better? You want to know if you're better?" He shook his head and pointed to the word again.
"Bette? Oh, you mean Kitty's mother?" He nodded.
Bless his heart. He wanted to know how Bette, Kitty's 87-year-old mother was. She had fallen ill about a month before he did, and was recovering in a nursing facility. He and Kitty had been visiting her every day before he got sick.
The staff came in to work with him. The plan for the day had shifted from getting him on his feet to getting him talking since he was desperately trying to communicate. He was semi-sitting up, so that was a good start, and he was able to indicate when he thought his chest needed to be suctioned out which is a great sign. He's not apathetic and wants to participate in his own care.
They switched the ventilator settings and one of the tubes in his throat. With this tube, you can cover up a portion of it and try to talk. Then they asked him to shout as hard as he could, and he was able to produce a couple of light sounds. At the third or fourth try, the poor guy threw up all over the place.
After they got him cleaned up, the speech therapist painted his tongue a bright cobalt blue. This was to help them to be able to ascertain whether he is swallowing the secretions in his mouth or aspirating them. If the crap came up blue when they suction him, then it is going into his lungs. The kid looked like a smurf exploded in his mouth.
Pointing to letters on a board is exhausting, so we tried lip-reading for awhile. I asked him to be patient with me, because lip-reading isn't one of my skills. "Tell you what," I said. "If I don't understand what you're trying to say, I'm going to pretend you're telling me that you love me, and I'm going to say 'I love you too!' back atchya. Ok?"
He gave me the thumbs up.
Without the sedatives, he is actually doing a good bit of breathing on his own. They're going to start trying to actively wean him from the vent. Baby steps.
When Kitty got there, she brought his Ipod. I borrowed a docking station with speakers from The Happening Dude, but neither of us girly girls (or old ladies---take your pick) could figure out how the darn thing worked. When Hubby got there in the evening, he was able to figure it out, so the kid has his tunes now.
Hubby stayed with him through South Park, and until they got him to sleep. At one point, Big Kid indicated that he needed to go to the bathroom, but was refusing to poop in his bed. They were able to get him on a bedpan and accomplish the mission. Joy!
4 weeks. Geez. Thanks so much for sticking with us and for all your support.