May 8th

Today was a pretty rough day for Christine - she's been through a lot and new frustrations seem to be continually popping up. Not having an explanation for everything I think is one of the hardest parts.

She and Mom had breakfast together outside, which I think was a pretty excellent start to her day. After breakfast she took another shower, though was told that she needed to be careful about how many showers she took because it was hard to keep her PICC dressing dry. While in the shower her legs gave out, and the day just kind of went downhill from there.

I opted to not go in to see her today as I was getting quite a bit of work done at home, and she had a good friend Laura coming to see her for dinner. Mom left the hospital to go for a run and shower at my apartment, and she was going to have dinner with me (in the end she didn't because Christine had some new developments and she rightfully wanted to get back to the hospital). This was the first night that Christine had dinner "on her own!" She wasn't really on her own though, because Laura wheeled her down to the cafeteria and helped her get her meal. They ate dinner together like two normal friends :)

Once returning to the room though it became evident that Christine's skin was re-inflamed in a number of areas. Her face, neck, arms, and legs had red puffy/splotchy areas on them. Additionally, she was feeling short of breath, her knees were swollen, and she felt like she had "elephant legs" because her calves and ankles were so swollen. This was somewhat alarming to the nurse, so the doctor parade began. Christine had a couple of doctors from her internal medicine team stop by, her PCP stopped by, and Derm came by. Mom wasn't back to the hospital yet at this point, and Laura took the spotlight in terms of talking to the doctors and keeping Christine calm. She really got to experience first hand a lot of what I write about in this blog - the uncertainty, the worry/fear when new developments crop up, and the parade of doctors that follows. Thanks so much Laura for staying with her!

Christine wasn't really given a good explanation (or even a theory) as to what caused the new redness and the swelling. They think the breathing is still asthma as the nebulizer continues to help. They took several blood samples today, both from her arm and her PICC line, to do a variety of tests. I think they are testing general blood cell counts as well as inflammation - if inflammation is observed they will probably do a rheumatology panel. Additionally, they are going to have a rheumatologist come by hopefully tomorrow to consult, as I think there is some concern that her symptoms could be a result of something new that has happened after the SJS (for example, we heard reactive arthritis being kicked around as an option). Thinking about there being a different condition is kind of scary, after all she has been through does she really need to manage something new? At the same time, if there is something that would offer some explanation and perhaps have a more effective treatment/management regime, we might be thankful to hear it.

Other brief medical updates for the day are that pain is going to try to switch her to oral pain meds and take her off the PCA. They were going to do that today but opted not to as she was having a pretty high pain morning. Christine woke up this morning with the sensation of chest pain, so they did an EKG to check things out and luckily everything was normal. They think the pain might have been related to the tightness she experiences with the asthma. Derm didn't make any changes for the day, just said to "stay the course". The favorite eye doctor came by to check in, and said that her tear ducts were definitely suffering, but that her eyes otherwise looked fantastic. At least one area of her body has healed! We'll give the eye doc the gold star for taking such good care of her.

Dan and Anika came by after a lot of the chaos of the new developments had died down, and Christine was really thankful and excited to see both of them. They brought her an awesome care package (I think made with the help of Purvi). I didn't hear everything that was in it, but I remember hearing something about lip glosses/creams and brownies. How can you go wrong with those two things?

Here's a shout out to my sister, based on a print I found on the internet today. After I saw it I couldn't help but think of Christine. It is by Bluebird Design, at www.society6.com. Sometimes thinking too far into the details of the future is overwhelming, and the best thing to do is just put one foot in front of the other!

Christine is surely not the only person in the world who has gone through something horrible, and there are many families out there suffering and losing people they love. My heart goes out to everyone who is in a position similar to Christine, or any family member who is standing by like we are and watching it all happen. Christine has unfortunately been dealt a rough hand, and can't seem to catch a break in life right now. I am so proud of her for striving to stay positive throughout it all though. I love her very much, and think she is amazing. I look forward to the day when she can enjoy being a 24 year old again.