While Aaron is in Kentucky for his grandfather's memorial service, I'm happy to be back in Denver again with Kari. Aaron just sent two dozen roses to Kari, complete with an "I love you" balloon, and so I'm ducking out to do a quick update while one of Kari's OT's is putting them in a vase for her just before they have a short therapy session.
Aaron calculated that Kari was in her confused mental state for 40 days and 40 nights, and we are all glad to be out of that dark night. Weeks ago, as she was slipping into that state, I remember that we were lucky if Kari slept for more than 30 minutes at a time, so the other night when she complained about only getting 4 1/2 at one shot, I reminded her of how just a few weeks ago I saw her get just 6 hours of night sleep in four days! She's been sleeping fairly well since about last Monday now, and it's a night-and-day difference, of course. Her main doctor is also trying to be very, very minimal with drugs. "We don't want to take a chance of influencing your mental condition again," he said this morning.
He might have to, however, though he's holding off. Kari still has painful spasms, this time centered more in her legs and especially in her stomach. There's nothing much anyone can do with the stomach spasms either, but the thought seems to be that these spasms are temporary and that she can work through them. "I'm tired of working through things," Kari said this morning, but, of course, she gritted her teeth and worked through them and seems to be able to keep on top of things. Her jaw shakes and shivers with pain sometimes, though, and a couple of days ago her right foot shook so violently that it rattled and swayed her wheelchair, which weighs about 300 pounds!
Yesterday was a very rough day because she had four phenol injections, two in each arm, one in the bicep and one above the elbow. They sent electric pulses down the arm to locate each nerve precisely, and the whole thing put her in excruciating pain and increased her spasms all afternoon and all day today. She says her whole body feels like when your legs are coming out of being asleep, all electric and spikey and buzzing. Phenol is a form of botox, and they gave her the shots to weaken her bicep muscles, which have became so strong that they overpowered all her other arm muscles and prevented her therapists from efficiently strengthening her other muscles, like her shoulder muscles. They had become almost locked up lately, too, so that her arms were almost always folding, palms up, against her chest. "No more chicken-wing arms after this!" Amanda, her regular OT said. Amanda said that she had wanted to have the shots a month ago, but Kari's mental state took priority. Now Monday they will stretch out her arms, which are still locked up, and then they will do some serial casting, putting her arms in drop-out casts which will allow her to extend her arms downward, but not fold them up. They want to get her palms turned downward, too. With arms outstretched and palms down, they will achieve a more functional arm form, and with more therapy Kari should be able to do things like feed herself with her arms and hands in that position. The arms, though, are still very locked and very painful, so she has a lot to get through again.
Still, everyone is so positive and happy to have her back. That goes for other patients and their families that know her here too. And Kari's basic health keeps improving and getting more and more solid. There is talk now that perhaps next week they will remove the trache tube. Heidi, one of her respiratory techs, thinks she's ready now. "I'll hug you so big when you get that thing out next week," she said this morning. They also talk about moving her over to the east wing next week. "Your health is getting way too good to be over here much longer," Dr. Balazy said this morning. He and her psychologist said it was also time for her to start being a resource for them, talking to other patients and encouraging them. Her psychologist said that since that was what she was good at, she should get back to helping the other patients here as soon as possible. There's still a ton of pain to get through, and when I go back in a minute I know she'll be shaking with it until she recovers a little from her therapy session; but she's also gotten through so much already that that can't help but inspire others. You can picture it, can't you?
--Richard R. Guzman