Don't Look if You are Squeamish

Whoop. Too late.

Genevieve says that it looks like they cut her in half. They did - but like Aaron says, it was across the grain this time. The other scar is from her previous bowel surgery. The feed tube is on the right, the two remaining drains are on the left. They removed another drain last night, so she only has one left! Today they also took out the central line that went straight into her jugular. She is now on oral pain meds and is doing fine.

She has been walking all over the hospital with Aaron. Not just on the 6th floor - but all over!

We still don't exactly know when they will let her escape from the hospital. Mom is thinking about what she is going to do to prepare the house for Vieve. There is a rumor of a new chair...

Working hard

Cindy here again. Vieve just told me this: An email from a friend had a simple statement that rings true for her, "Keep up the hard work." She is truly working hard to walk, move, and eat. Still no word on exactly when she will be released. Too many tubes, including two drains, still in. She had visits today from the transplant coordinator and dietitian, who talked about what to do after she gets home.

Fewer tubes

Cindy here. Before I left the hospital last night, the nurse stopped Genevieve's tpn (total parenteral nutrition), which came in through the IV into her jugular vein. Hurray! The feeding tube into her stomach is now being used only at night. She is eating a variety of items, but in small amounts. Today, the nurse practioner on the transplant team removed one drain tube from her tummy--very carefully and gently. There are two left, and the plan is to remove one drain each day. Vieve has been fearing these tube removals because of a painful experience 10 years ago when she had her colon removed. This time, the nurse gave her a sedative and numbed her skin around the tube. I distracted her by talking about Christmas presents for Danica. A couple of stitches closed up the hole. So it wasn't bad at all this time.

Occupational therapy has "released" her, since she can put on her own pants, walk to the bathroom, and brush her teeth by herself. Unfortunately, her temperature was 100.4 one time last night, so the doctors have changed or added antibiotics. She has had several blood cultures today just to make sure there is no infection. The endocrinologists told her today that she is "unique." Nothing has been normal about her case yet, so they are not quite sure what to do with her. She is getting insulin shots, but we hope the need for insulin will decrease as her pancreas works up to full capacity and her diet stabilizes. She continues to walk, and she got dressed in her own clothing today--a pink shirt and striped pants. Quite stylish for the hospital. Her release from the hospital is still indefinite. The doctor on the transplant team said "the end of the week."

Picture of the Day: The Array

This is the array of "stuff" on Genevieve's IV pole. It actually looks a lot less intimidating than the pole in the ICU.

A Busy Day

Cindy here. Genevieve had a steady stream of hospital personnel through her room today. In addition to the normal blood pressure checks, finger sticks, blood draws, drain changes, dressing changes, and IV checks, several teams of doctors have been by, the physical therapist walked her around, the diabetes educator gave her a loooooong instructive talk, her new transplant coordinator came by with post-hospital info, and a pharmacist brought by a 3-month supply of her medicines. We learned that Vieve will be monitoring her blood sugar 4 times a day to make sure her pancreas is producing the required amount of insulin. She is supposed to eat 3 balanced meals a day. (It has been a long time since that happened. She hasn't felt like eating much for many months.) After she gets out of the hospital, a home health nurse will take blood samples twice a week to monitor her liver functions. And the family got a warning--the prednisone will make her moody! Feltses have been known to be moody even when they haven't had liver transplants, so we can deal with that one.

AND Vieve took a bath (actually in the bathroom) and washed her hair in real water! It took two of us to accomplish that. Vieve sat in the shower and Anne helped suds and rinse her hair while I handed in washcloths and towels. Amazingly, Anne didn't soak herself with the sprayer. She is much more coordinated than I am. We decided we could do a much better job of designing hospital bathrooms so they would actually be usable for people who have just had surgery. Vieve is not eating a lot yet, but she nibbled on a "cobblestone" muffin from Panera's. She is still getting nutrition from a feeding tube.

Several of the people in and out of her room today have mentioned "Friday" or "the end of the week" as a probable release date. The plan is for Vieve and Aaron to come to Rolla for a while so we can all watch over her. She still has a lot of drains and tubes that have to come out before they let her go. Right now we are watching her sleep, or sort of sleep. The high dose of prednisone has made her body twitch a lot, and it doesn't seem to us that she is getting a good quality of sleep. But who knows? Although she talks a lot when she dozes off, she's quiet right now.

A Special Visitor

Genevieve had several visitors yesterday and today, including Miss Danica! Grandma and Grandpa Meyer brought Danica to St. Louis on Saturday. She got to visit her Mommy on Saturday evening; eat some toasted ravioli, tomatoes with salt, and pasta at Guido's on The Hill with the Felts and Meyer families; stay overnight at the Holiday Inn; eat chocolate chip pancakes for breakfast; and play at the hospital playground with her Daddy and Grandpa Meyer. They must have worn her out, because by late lunchtime, she was in "tornado mode," which is how she acts when she is overtired. Grandma Meyer reported she was asleep in the car within 5 minutes on the trip back to Orrick. The visit surely was good for Genevieve. She continues to doze off and talk in her sleep--mostly to Danica.

Becca, Aaron's sister, also drove all the way from Kansas City to visit today and fixed Vieve's hair for her. Grandpa Felts came, too, riding a wheelchair from the car to Vieve's room. Vieve's dad drove back to Rolla today, hopefully to chase away or capture the raccoon or raccoons that have invaded the Felts garage since we've been away. And Libby went back to Laramie via flights to KC, then Denver.

Vieve ate most of a milkshake today, some Corn Pops provided by the hospital (those are healthy?!!), and some juice. She is walking a little more. She carries on lucid conversations with us, but also drifts in and out of sleep, dreaming and talking.

Walking! ... and hallucinations ...

Cindy here, Genevieve's mom. Genevieve is getting out of bed to go to the bathroom, and the physical therapist helped her walk out of her room, into the hall, and back. Genevieve says there is "no happy medium" when it comes to pain control. Before I got here, she says she was curled up in pain. Now she can sit up and get out of bed, but she has crazy dreams--hallucinations, really--when she drops off to sleep. The nurse says it is a combination of drugs--steroids, benadryl (for miserable incision itching), and morphine, and I don't know what else. In her sleep, Vieve mostly talks to/about Danica, telling her not to eat off the floor or pull something off the counter top! Vieve says she has taken Danica to the ER three times already today in these dreams. She just asked me to make the really soft brownies she likes, but she was afraid the ingredients weren't in the pantry. I told her I would go to the store and get them, and she dropped back into sleep.

Genevieve's hands are a little twitchy and she has some involuntary muscle spasms, which hurt, of course. Aaron is working away at cleaning and repairing her laptop, which she spilled hot chocolate on before the transplant. Maybe soon she will even be writing her own posts. Not making much progress on food, but she is keeping down water and ate a fourth of a popsickle this morning.