May 3rd - Happy Birthday Dad

Well, Christine made it through Thursday night relatively event free, grumpily wearing oxygen and definitely a little bit out of it. We have somewhat aggressively started to question the continuing low O2 sats, so it is definitely on the doctors radar now. They are trying a different combination of morphine tonight to see if it helps, though I just Skyped with her before she went to sleep and her level of fading in and out and general alertness seems to the same as the previous couple of nights. Her O2 sats are still a little bit low, so she is sleeping with the oxygen again tonight. She put lots of Vaseline in her nose to make the flow of air more comfortable. She says she feels like a 90 year old woman because of the O2 line - I'm sure there are a bunch of elderly ladies out there who would take issue with that comparison! I have a new theory that one of the other medications she is getting could be too high as its one that was recently increased, so tomorrow night we will try reducing that and see if it helps with her alertness and O2 sats. She's using her incentive spirometer regularly now too, just in case that helps. It is difficult to get right because her pain levels are so high! Mom and I aren't with her tonight, but she has a great nurse named Sam taking care of her. 

Christine wanted to make sure that I noted that she is sleeping in the special jonnys that Grandpa George and Linda purchased and washed for her - a favorite wardrobe item of my Grandfather's from when he had knee surgery! Also, she has been sleeping each night (and spending most of the day for that matter) propping her PICC line arm up with a large stuffed dog that our friend James sent. She showed me tonight that "PICC Line Puppy" has developed a hole in his stitching  and she has asked for some thread and a needle to perform emergency surgery. I think PICC Line Pup will receive this treatment sometime tomorrow. With these gifts in mind, Christine specifically asked that I once again thank all of you for your continued support, and special thank you to everyone who has donated to her fundraising effort! An exciting bit of news is that Christine's fundraising page is a featured fundraiser (based on popularity) on the Cause Wish homepage! Christine thought that was pretty cool. 

Today was a relatively eventful day, as far as days in a hospital bed at MGH go. She woke up with Mom, and they had breakfast - Christine says she had a blueberry muffin and hash browns. Dad left my house early to go in and visit for the morning, and Christine was soon horrified to realize that today was Dad's birthday and she had totally forgotten. We tried to reassure her that keeping track of dates was nearly impossible in her situation, but she still felt awful. I'm sure Dad was just happy to spend part of his birthday keeping Christine company. Christine felt this morning that her face and chest had "new rash" or were more red than they were yesterday, and when the Derm resident stopped in to check her out she concurred but might have indicated that cycling is to be expected. Here is a picture of how Christine looks now - if you look back to how she looked when the blisters were in full swing, you'd barely know she was suffering from SJS. However, Christine will be the first to tell you that she is very much still suffering because the sores in her mucosal areas are still worse than ever. You can see a picture from one of her worst days in this post. 

The ENT (Eye Nose Throat) doctors came in to consult today, and I was actually encouraged by what they said, though they didn't necessarily have good news. They felt that the sores in her mouth were consistent with SJS, which was just nice to hear because it serves as a second opinion to the Dermatologists (who have been doing a very good job, don't get me wrong). I was always concerned in the back of my mind simply because at one point Derm had felt the sores were "interesting" and "not typical" of SJS, in addition to commenting that the flare up was unusual. The other good news from them, in my opinion, is that some of the sores have healed. The bad news is that many of the sores are still open, and many have yet to fully blister and open - so it sounds like the mouth still has a long road ahead. There recommendation was as much magic mouthwash as she wanted (a numbing mouthwash). They checked her ears while they were there, and luckily those got the A-OK. She was also visited by her new PCP (the other one has rotated) and we quite liked her (I met her only through the phone, as today was the first day I didn't stop by the hospital at all). 

I have saved the best news of the day for last - Christine went on four "long" walks today, and she went outside in a wheelchair on two different occasions - for 10 minutes each time! Dad got to push her outside the first time, what a birthday present huh? Here is a picture of Mom, Dad, and Christine getting ready for trip #1. 

Christine was also visited today by Rachel, who brought frozen yogurt, Lauren, who brought almond joys, and Grammy Pat and Grandpa John who brought fresh flowers from the garden. Apparently at some point today Derm expressed concern about the bacteria in the water of her flowers and was considering disallowing them, but some discussion must have happened behind the scenes between doctors because in the end the flowers were given the OK. Everyone who comes into the room tells her she has the most beautiful room, the best smelling room, and the most supportive group of family and friends. Please continue to keep her in your thoughts and prayers!