Today was a tremendously good day for Denise. The ventilator was taken out of her room. She told me that she felt disoriented, but I'm glad that at least she knows she's that. We called out from her room and she talked to her parents and both sisters for a few minutes. That was a morale booster for everybody. Then we talked about everything under the sun for about an hour. Gracie asked for a picture of Denise in the hospital, so I took some pictures of her. We've got video that I show the kids, but Gracie wanted a recent picture printed out to tack onto the wall. I told Denise that her web site has a pre-crisis photo of her, and asked if she'd want me to post the pictures I took today. She said that if I print them out big so she can see them (her eyes are a little blurry), she would look at them and decide.
Here's a portion of a note that the PT left with me: "We sat at the edge of the bed 22 minutes this morning, & Denise balanced almost the entire time by herself!!" They asked if we (the family) could start to work on stretching Denise so that PT can start working with her on standing & other activities. Standing!
Doctor said that tomorrow they may change the trach out again to one that doesn't have the balloon (cuff). That would make it easier for her to speak, but also harder to go back onto a ventilator. But he thought she wouldn't need it. I asked about the possibility of her being able to sip water, and he said that somewhere down the road, when the NG tube output drops, and after a swallowing evaluation, they can get her on a clear liquid diet. I just found out tonight that the swallowing evaluation will be tomorrow or Monday! Also, the doctor said that if Denise keeps chugging along at this pace, they'll move her out of ICU and into a "regular" room (and then she'll be able to get even more rest). That step from the hospital to a long term acute care facility for rehab may happen sooner than I'd expected. Denise's case manager talked about a place in the city of Glendora a while back. That would be great to just be a couple minutes away again. And since it's the opposite direction from L.A., the traffic would be a piece of cake.
There was an MRI today to check her head. The doctor told me that they're looking for optic nerve damage, and that the cocci can sometimes get to the retinas, leading to blindness. That's very rare, but they don't want to let anything slip by. And frankly, everything about Denise's struggle seems to fit the "very rare" catagory. The opthomology people were concerned last night, less so today. Denise also said that she thought her vision was not as blurry today.
She had plenty of visitors. A couple of the grounds crew that used to work at my school came by. Denise knew who they were and was very happy to see them, waving hello and goodbye. They had some annointing, some praying, some reading (Psalm 118). Denise loved it, raising her hand up and saying "Hallelujah, Lord!" when they were done (because she liked their visit, not because she was glad when they were finished). Then later in the day, she got a 3-hour visit from two of her old college buddies (one of whom is currently my sub in the computer lab). She was up for the visit. They were massaging & moving Denise. She must have liked that, because she said "I'm purring!" They told me that Denise was praying with them, talking about the days when they went to college (and associated shenanigans), talked about a dance ministry they did together, and more recent "life" issues. She said that she hates her bed and wants a softer one. The bed she's in is top-of-the-line and costs as much as a car. At Arcadia Methodist, they had an air mattress on top of the fancy bed mattress. Maybe they can procure one for her at USC. When our friends asked Denise what they could bring her next time, she said "Water" and then "Jamba Juice - strawberry banana smoothie." About 7pm she finally got tired and asked for the lights to go off, some earplugs, and said, "I'm starting to slur." Indeed she was all pooped out, so I decided to stay home & rest (the kids are having a sleeping over at a friend's house).
Stats today are as follows:
Heart rate ranged between 98 & 115, blood pressure around 100 systolic, temps 100ish most of the time that I saw her, but crept up to 101.5 when I called a while ago to check in. Now at this point I become one of the people that fall under "Ye of little faith." There have been a couple of times that fevers have been down, only to skyrocket again within a week or two, or things have been going so well, only to suddenly turn into a life-threatening crisis. Upon sharing this feeling with someone, it was pointed out to me that *this* time, Denise is off the vent, and much, much, much better than she was in previous periods of progress. That's a good thing to keep in mind.
A few final things not directly related to Denise's condition...
My dad had to go to emergency yesterday. My understanding is that my dad's cough got very bad and he needed some attention. For those of you that are new to this blog, my dad's fighting cancer. Indeed, I think we all figured he'd be the one in a hospital bed at this point, not Denise. My nephew was staying with my parents for a while, and they were driving him back up to reunite him with my brother again, so they're out of town while this is going on.
I can't tell you what a great support that Pasadena Christian School has been during this ordeal. I trying to decide if it's a better place to work or a better place to send a kid. Probably a tie. All kinds of support have been flowing in for me and my family... emotional, spiritual, practical, financial, physical, food (Philippe's French Dip for the whole family delivered on site at the hospital today, for example). Last school year, before Denise's ordeal began, I was sharing concerns about my dad's health. Offers of help for my parents rolled in. Help for Denise's parents came recently. I received an unsigned letter with $60 to replace the money stolen from Denise's mom's purse (by the way, it turned out that her social security was not stolen after all... they found it safe & sound at home). I stopped by work and mentioned that they needed to borrow a microwave for their apartment, and the request was filled pronto. Here's a great one: Just this afternoon a mass email was sent out to our parents that requested help in freeing the pulleys of our flag pole, which somehow got stuck at the top. Our principal said that our ladders & scaffolding couldn't reach, and asked if anyone had access to a cherry picker truck. One of our parents works for the fire department and sent us a hook & ladder to fix our flag pole. That happened during school time. I imagine that all the teachers probably gave up and let everyone watch the firetruck for a few minutes.
Earlier today you were asked to save some "pull" for my fellow teacher Karen Shaw (I just remembered that Denise was her classroom aide a few years ago). Word came in late tonight that the swelling around Karen's brain is massive, and things are looking very bad. Her husband has signed some serious paperwork. Denise & Karen are fighting very different health struggles. If there's even a glimmer of hope (or even if there isn't), things can take a big positive turn. I've seen it years ago with our daughter Gracie, and I've seen it during the past three months with Denise. You don't know how abysmal it is to be on the verge of losing your spouse unless you've been there. I don't wish that feeling on anybody. Please, please, please toss up a whole lot of prayer tonight for Karen, her husband, kids & grandkids (my students).
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