May 2nd

Another day passes in our little niche at MGH. Christine stayed over on her own again last night, and actually spent the morning alone as well because I didn't arrive until 11am. She says she likes the time to reflect on things and relax. I picked her up some goodies on my way in, and got there in time for her to go on her first walk of the day. I realized while I was in there today that we haven't said much about her walking lately. She tries to walk 3-4 times a day, is much steadier on her feet, and is walking a much further distance. She walks past the nurses station, out of the ward, down the hall, past the "solarium" sitting area, and turns around at the elevators in front of the psych ward. She is getting stronger, but feels a decent amount of pain while walking and gets tired quickly.

I also realized today that if I had been thinking even more about documenting this experience, I would have taken one picture a day of Christine in her bed so that we could remember how everything developed and healed. I can barely remember each day, but looking back at the one picture I took of her when her face was at one of its worst days, its amazing to realize how the memory has already started to fade. We say she isn't entirely healed now, and she isn't - but she is orders of magnitude better looking than she was before. Unfortunately, her pain is still high and the mucosal areas aren't keeping pace with everything else.

After her walk Christine enjoyed her first "real" lunch delivered on the tray, meaning she has graduated from "dry soft foods" to "adult diet". This translates to meals that include salads and pieces of meat, as opposed to just mac and cheese or grilled cheese. Her nurse and I washed her hair again today using the pork chop, just in time for Grandpa John to show up for his daily visit. He has been there almost every day since she entered the hospital - it's amazing! He says he gets working and thinking about Christine, and decides he should just go see her.  Christine's work friend Rebecca stopped for a long time today before she went to work, her high school friend Zach stopped, Kimmy stopped, and Mom is there now spending the night.

As I type this entry I got a call from Christine that there was a bit of a situation with her O2 sats again. I've mentioned this before, but her O2 sats have been a bit lower than people are comfortable with for a few days now. Even so, they've managed to stay above 90 even while sleeping, so nobody has taken any action yet. As she was falling asleep tonight I guess they were dropping to as low as 86, which was clearly not an OK number. The nurse has made Christine sleep with oxygen, which is really annoying her because it is drying out her nose and throat. However, I agree with the nurse - that number is much too low and O2 seems to be required here. The question I have is - what's causing the numbers to be low? So far a popular opinion has been the decreased respiration drive as a result of her high pain medication dosages, though when we asked the pain doctors about that they didn't think that was the reason and instead blamed the bed rest. After tonight, I think this is something that the doctors need to get to the bottom of and find a solution to. If it's the pain medication, that's a reasonable explanation and one that has a solution, at least in the long term. If it's not those and its the bed rest, that again can be remedied with exercises. If it's neither, could there be another explanation that we need to be more concerned about?

It's always something... it seems like even on the good days there is one thing that still causes worry. Tonight its the O2 levels (now at 94 with an O2 mask), and the feeling of a UTI. She had another urine culture today but so far it has come back negative, even though the pain still exists. Hopefully some light can be shed on both of these issues tomorrow...

We've started a fundraiser!

All of you have been so amazing, fantastic, wonderful, whatever adjective you can throw out there that means great in supporting Christine. The constant comments, the flowers, the cards, the gifts - we are just speechless about the level of support everyone has shown Christine. She has even received donations from her co-workers and one good friend from VT towards her car payments. We cannot thank you enough.

In case you are looking for ways to do more, one of Christine's good friends has started a fundraiser to help raise money towards Christine's known monthly expenses, as well as any unforeseen medical costs that are going to arise during the rest of her recovery. If you are able and willing to contribute, every little bit will help her out! You can donate by clicking on the fundraiser link here: http://causewish.com/project/help-christine-defeat-sjs

I have posted the fundraising site as a permanent page at the top of this blog (the "Donate!" tab). You guys are all amazing! All donations are done securely using PayPal.