May 1st

In case you didn't see it, check out the other blog post for today that was written by our Aunt Cindy - she did a fabulous job! Aunt Cindy was here from 10-2 today, and it was great t have her help, company, and words of encouragement. I agree with everything she said in her post about how nice its been to get to know each other better during our hours in the hospital room. It's tragic that Christine is going through this, but it has undoubtedly strengthened relationships and personalities in the process.

Christine spend her second night alone last night with one of her other favorite nurses, and from what she told me everything went smoothly. Two bathroom breaks, and I think she is enjoying having the time to herself before she goes to sleep and when she wakes up. It would be so hard for me to be in one room for 3 weeks straight, and to never have any alone time! I arrived around 8am so that I could be around for as many of the doctor visits as possible. I was pleased to see that Christine is looking much less "red" today and is a healthier pink tone. Her lips are also more healed than even yesterday. The inside of her mouth is still full of sores though, so the process is not over yet. She also feels discomfort in her bladder area when urinating again, which is a bit worrisome considering she is still on the antibiotic for her UTI. We've alerted the nurse and they will watch it / follow up. I know that I'm a "worrier", but its really hard not to be concerned when new things crop up - and hospital bacteria are really scary.

The pain doctors came by today and are going to increase her the nerve specific pain meds because she doesn't feel too much of a difference in that department yet. We also discussed her O2 sats a little bit because they are lower than they were a week or two ago, though nobody seems concerned. I thought maybe they were from the pain meds, but the pain docs said that would only be the case if the meds were knocking her out, which they aren't. They recommended she use her incentive spirometer (a breathing exercise machine thingy) frequently throughout the day because her O2 sats may be low as a result of being in bed so much and using her lungs less. We have done that several times today, so we'll see if there is any long term improvement and will continue using in it in the days to come.

First the Derm resident came by, and then while I was away for an hour to walk my dogs the Derm resident came back with her attending and talked with Christine and Aunt Cindy. Generally it seems like they think her skin is looking less inflamed, and that some of the larger connected red areas are dispersing and becoming just isolated spots. They also noted the improvement in her lips, though agreed the inside of her mouth wasn't looking any better. They have decided to lower her steroid dose for tomorrow by 10mg, with the plan to lower it 10mg more the day after that. They will watch carefully for any negative changes, but they don't want to prolong the use of steroids as this can have other negative health effects that are pretty scary. People here say that steroids are the best worst drug ever.

Christine was pretty excited today because nurse Jena and Aunt Cindy made a team effort to wash and condition her hair (twice) again today using the special bed washing basin that they call the "pork chop" because of its shape. Her hair is looking nice and clean and all together normal now - yay for no more grease or scalp peeling! Christine had a couple of coworkers stop in today as well, and the stress person came by to do another "touch therapy" session. We learned more about it today, and it sounds like she tries to "ruffle" the energy layer that exists 2-3 inches around Christine's body (or anyone's body). It sounds very ambiguous, but Christine says she notices an unbelievable difference when the woman finishes. Kind of neat!

Uncle Chip and Sabrina drove down wearing Joe's Pond t-shirts as "team Christine". It was so cute! They brought a third shirt for her. Grandpa John also came in later in the day, and the three of us enjoyed a cafeteria dinner in the room. Christine and I had chicken caesar salad and a roll, and Grandpa had a pork chop and then some of the dinner that came on Christine's tray that she didn't want. The nutritionist stopped in at dinner time and is going to ask Derm if Christine can have a "normal diet" sent up through nutrition rather than the "dry soft foods" she is offered right now. There are only so many tuna/chicken salad sandwiches  grilled cheeses, and mac and cheese dishes you can eat. I am sitting with Christine until she starts to get ready for bed, then I'll head home and she'll stay here on her own again. Currently she is napping - I think it has been a long day!