May 5th

From Christine: So, today was an awesome day! 

Note: Today's entry is written entirely from Christine's notes as I wasn't in the hospital very long today. She is doing a good job with notes! However, you will notice I have less "filler material" to work with. 

The team came in at 7:00am to investigate the new/changed ulcers in the mucosal areas, and noted that several of them are starting to open. More blisters are opening on her heal as well, and her skin still has red patches. The Derm team came today and decided to hold her steady at the current steroid dosage for the next two days, and then she'll go down by 5mg again. They have decided to hold off as long as they can on a chest x-ray because they aren't really the safest thing, but they are watching her because her right long sounds like it could have a touch of pneumonia starting. They want to see if the sound improves after she uses the nebulizer before ordering the x-ray. She is still wearing the oxygen at night, and unfortunately that resulted in a really bad nosebleed this morning. The pain docs came by again and decided not to change the dose of the nerve meds right now, but are thinking they will increase it again soon.

As mentioned in the last post, Christine enjoyed Grandpa John's pancakes for breakfast! She was on her own until 11:30am today as Mom was tied up and I was busy with Pepper this morning. I arrived first and Christine and I did yesterday's blog post. We were going to play a Scrabble card game, but Mom, Tommy, and Ruby arrived before we got the chance. We did, however, go for a long walk with nurse Jena. Christine has been making candy goodie bags for the nurses who have been taking care of, and everyone she gave one to today was so excited. Not long after Mom et al. arrived, Dounia (her good high school friend) showed up with ice cream, a beautiful orchid, hand lotion, and cute animal pictures from National Geographic magazines.

At lunch time Christine went outside with Jena and they sat together in the shade and Christine had a phenomenal time. She said they chatted for a full hour, and Christine said that it made her feel like she was "normal" again, just enjoying lunch with a friend. To help with going outside and being in sunlight in general, Mom, Tommy, and Ruby went to buy her polarized sunglasses and Christine said it totally changed her attitude because she was able to see while sitting in the room and while walking. The eye doc had specifically mentioned she would need to wear polarized glasses all the time (at least for awhile) because she has lost the protective layer of her eye. Mom and Ruby took her for a walk to sport her new sunglasses. With her newfound vision Christine decided to go for a walk outside with Mom, Tommy, and Ruby - what a first! Christine started crying when she walked through a patch of sun because she said it felt so good and was such a good experience.

Christine with Mom and Tommy 

Christine with Ruby

Laura from work visited and chatted with Christine for a long time, and brought her a sea glass pin that Jude made for her. She also brought her a sea glass tea light holder (with a battery powered tea light in it) that she made herself, and some yummy fudge. Christine said she had a really good time visiting with her. After Laura's visit the PCP came by to check in and recommended that instead of the nose oxygen she wear a shovel mask with the nebulizer in it so that it's less dry. She was quite concerned with the lung involvement, but agreed to wait and see if the sound improved with the nebulizer.

Before heading back to NYC, Ruby painted Christine's toenails with flower designs. Later, Mom and Tommy ordered takeout from Cafe Podema, a place Christine always ate at on Sunday's at work. They stayed with Christine until the start of her bedtime routine. Her night nurse tonight is Ashley, who she loves. Christine gets to spend most of tomorrow with Dad, which she is really looking forward to :) She thinks this is it for today's summary, love to all!