Monday, January 16, 2006

Waiting to see where she goes next

OK, here's where we are: We don't know where we are.
Denise was better today... she enjoyed her therapy session, and she and I took a walk (over 150 feet, on top of what she'd walked in the morning) and did some exercises. She was alert & awake longer today as well. It was nice to see the improvement. She did vomit a little just before lunch, though. There was no emesis bowl handy, so she just threw up into a little soup bowl. Neither the nurse nor the assistant knew that Denise had thrown up until I told them (and asked to have the emesis charted). Denise forgot to mention it. And, well, you've seen hospital food. If I were looking at a bowl of hospital food and a bowl of hurl right next to it, I might not notice the difference, either (really, she's usually liked this hospital's food). She weighed 90 pounds today. Same as yesterday. A couple pounds heavier than when she was admitted on Wednesday. We can expect her to put on between 1 & 2 pounds per week. Her healthy weight is around 125. You do the math to see how many weeks it'll take her to get back up. Today she ate a few spoonfuls of yogurt for breakfast and a few spoonfuls of pudding for lunch. She downed a small chocolate truffle in the late afternoon but didn't want another one... a sure sign that she's ill. I don't know how dinner went. But I know she's sick of chicken broth. The dietitian gave us the results of Denise's calorimetric test from the other day. Her REE (resting energy expenditure) is 1049 calories. They figure a 20% increase for activity, so they've got her estimated at 1550 calories per day, so the TPN is going to deliver that since she can't take much by mouth. Denise said she's almost used to vomiting, except she doesn't like messing her sheets & clothes. Sad, huh?
I did go to visit the potential next facility today. I ran into some very nice people on staff, and hope that they're typical of the staff there. I was told that their people are working with the case manager to get Denise in, but nobody knows the status or timing yet. There didn't seem to be any rooms available for just one person. Every room had two beds, one bathroom, two TVs. The shower rooms were down the hall. Denise didn't like the shower or TV situation. Every TV in the place seemed to be on, and turned up good & loud. Denise & I have often thought we should just get rid of our TV, except we do need it if we want to watch movies. But she did like that the kids & I could eat in the dining room with her, and that the facility will let us bring our dog as long as she's on a leash & doesn't bite. That should make Chloe happy, as she's been neglected for about six months. She's dug up the yard pretty good to prove it to us. The facility's administrator has been there for about a year or so, and I heard that she runs a tighter ship than what's been in the past. The rehab rooms seemed larger and better-equipped than Huntington's. But at Huntington I definitely saw how the people doing the therapy more than make up for visually lackluster equipment. The downer is that PT & OT are only one session each per day, 45 minutes per session. Denise was getting much more therapy at Huntington's rehab. Anyway, if anyone has any input on this SNF, their contracted doctors, or any other aspect of the facility, please send us an email (pdjwilliams@yahoo.com). But enough of that.
The hospitalist took the time to call my aunt late tonight after a heavy workload today (I believe it, based on what I saw in the hospital this weekend). We appreciate that she's addressing our concerns. Here are the highlights of the conversation:
She did not know that Denise vomited today, so we're going to get on top of having nurses ask Denise. The GI doctor decided that no endoscopy would be performed at this time (reasonable, since an invasive procedure with a PICC line and TPN going would increase the chances of infection). He didn't have any words of wisdom about why Denise is unable to hold most food down. Chest x-ray's OK. Urine's OK. The doctor from USC will be checking with Denise tomorrow. He saw her at her lowest and has been checking in on her even after she moved to Huntington. The ID people are following up on Denise's fever and have ordered up a gallium scan for tomorrow. I believe that she was going to have one earlier, the isotope was injected, but then she was transferred to USC and the actual scan wasn't performed. An ultrasound was performed on both legs to check for DVTs, and everything was OK. We had thought of possibly letting Denise come home *if* we had someone on site to run the IV & other needle-related work. The doctor stated that it would be better, if anything did go wrong, to be at the SNF because they'd have an RN on site 24/7 and doctors on call. True enough.
So we're just waiting to see what happens and enjoying every step that Denise takes toward getting stronger. If only she could keep that food down now. She's got quite a complex history and I'm still uneasy about the thought of moving her from an acute care setting to a SNF setting at this point. I admit that I'm far from being a doctor; I'm not informed or experienced enough to know what's best for Denise. Not that I'm the insurance company, either.
Pull some more for her & the people that will be making the decisions about what to do next.

2 Comments:

Anonymous Sarah Mair said...

We're all still praying faithfully here in NH, and boy is it nice to pray for Denise to keep food down and gain weight instead of that she would live through the next day! It is frustrating to read about all the different opinions of different doctors and lack of communication between staff (as well as between facilities)... your continued hold on sanity can only be by God's grace! :-)
By the way, Matt and I didn't hook up the cable when we moved into our new house, and we put the TV in another room that we rarely use, so it's plugged in and available for movies and video games, but we never use it. If we watch movies, we usually play the DVDs on the computer. It's been great to not feel enslaved to the dang thing.
hang in there!
love in Christ,
Sarah

January 17, 2006 2:49 AM  
Anonymous Anonymous said...

Still "pulling" in prayer for your wife and for you Mr. Williams :c)

PCS Mom

January 17, 2006 12:08 PM  

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