May 9th

Well, I wish I could say that we saw some improvement today, but sadly not much happened to get excited about. Christine woke up with a very swollen knee that she couldn't bend, and so she had a very difficult time walking to the bathroom. She told me that it felt like someone had smashed her knee with a baseball bat. They called the doctors in, but nobody really had a good explanation. Her ankles and calves were more swollen as well. They tried icing everything with ice packs, but they heated up too quickly. Mom finally had the idea of getting her one of the cuffs that fills with ice that she had when her ACL was operated on, and while it didn't seem to do much for the swelling it did help some with Christine's discomfort.

Cindy came today, and she and Mom brought lunch back to share with Christine from Whole Foods. While they were away Christine had a bit of a maintenance catastrophe when a ceiling panel dislodged and nearly crashed on top of her! They had move her bed way over to prevent anything dirty from falling down on her while maintenance fixed the problem. After lunch the therapeutic touch lady came by, which is always so relaxing for Christine. I don't know what that woman does, but its great.

Rebecca and Lauren visited her tonight, and I came in around dinner time to take her down to the cafeteria to eat. Mom came with us because Tommy hadn't arrived yet (the two of them were going to go out to dinner). Unfortunately, as soon as we had sat down at the table to eat Christine started uncontrollably shaking. It was the most bizarre thing to witness. First I noticed that her hand was shaking quite a bit while she lifted her spoon, and I asked her if that had been happening all day. Not five minutes after that her entire body was twitching/shaking, so Mom and I scooped up her tray and wheeled her right back to her floor - needless to say we were a little freaked out. The resident came in and checked her out, the nurse was there. Nobody had a good explanation... after a dose of morphine (they took her off the PCA today so she has scheduled oral doses and a few allowable IV doses) and ativan Christine fell asleep and the shaking stopped. We aren't sure if the shaking stopped b/c of her sleeping, or because of the medication dosages, and nobody seems to have a good explanation as to why it happened in the first place. The whole ordeal left Christine exhausted and in pain because of all the activity in the muscles.

Here is a picture of her sleeping after the shaking episode. You'd never know she was uncomfortable by looking at it, but she sadly was and still is.

Rheumatology did come by today, and they suggested prescription strength Aleve for the joint swelling. They didn't seem to think that Christine's symptoms are another condition that has happened as a result of the SJS. They explained to Mom and Christine that even though the SJS trigger is now long sense out of her system, her body still thinks it needs to be fighting. They feel that the fluid in the legs and joints is similar to the fluid that was in the skin when it blistered and separated, and is just another manifestation of her body's autoimmune response that will improve with time. I do hope they are right, because its scary and difficult to watch a new symptom crop up each day. Christine deserves a break from all of this pain! Derm came by really late tonight and discussed the negative side effects of long term steroid use (e.g., Cushings disease) and it freaked Christine out a bit so I think there will be a discussion tomorrow about whether the taper rate can be sped up at all. It's a difficult balancing act for sure...

Christine will be spending the day tomorrow with one of her best friends Janie, so she is very much looking forward to that! Just keep swimming. I know how frustrated you are and how tired you are of being in pain Christine, but hang in there. We all love you.

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. 

May 7th

From Christine: I showered for the first time in 4 weeks!!!!! 

Need I add more to this post?? Today Derm gave the go ahead for Christine to take a real shower, with soap. She was so giddy about it! She and her two of her best nurse buds (Allie and Jena) made the treck down the hall and made it happen. Christine said it was great to finally feel clean, though it didn't feel as good overall as she hoped it would. There were areas of her body that stung quite a bit. Still a huge step though!

Christine and Allie before the shower.

Christine, Allie, and Jena before entering the shower. 

Christine after the shower. 

Discharge was also discussed today as Derm feels, from their end, she is ready to go home. That doesn't necessarily mean she is fully healed, it just means they think she can finish a lot of her healing from home. The rest of her team needs to be on board with it though, and gynecology in particular wants to still be able to watch her. We are trying to get things ready for discharge on Monday, but it is really still a waiting game to see if that will be possible. There are a lot of details to work through to make discharge happen too, like setting up visiting nurses, medications, beds, chairs, etc. They will also have to start talking with her about switching from the morphine PCA to oral pain meds. 

Christine had quite a few visitors today too! Cindy spent the morning with her (and they had breakfast together outside!), and Grammy Pat and Grandpa John came for the evening. Her friend Zach from high school came and delivered her an order of her favorite truffle mac and cheese from next door. My friend Ingrid's mom and sister Grace stopped by as well, with a great card from Grace. I came in around dinner time, and Mom, Christine, Grammy Pat, Grandpa John, and I went down to the cafeteria for dinner! This was the first time Christine ate dinner down there. We wheeled her down in the wheel chair, and all sat at the table like a normal family to eat. 

Christine enjoying her dinner! 

Christine and Mom are enjoying the night with Ashley tonight - Mom's decided she'd like to stay over for a few days I think. Goodnight everyone! 

May 6th

Christine woke up today and had a relaxed breakfast on her own, with the help of yet another favorite nurse. Dad arrived around 11am to spend the day with Christine, and arrived just as Christine was getting her hair washed again with the pork chop. I think the highlight of Christine's day was when Dad took her outside in the wheelchair to enjoy lunch. Christine did notice while she was out there that even a little sunlight hurt her skin, so it will be important for her to keep covered as the healing continues.

Cindy, Katie, and Megan came to visit for the afternoon/evening and brought some goodies from Trader Joes. I came in just as they were getting to leave, after spending part of my day with vet visits and planning for Pepper. It seems he is on the mend! Dad, Christine, and I ordered take out together again, a fun little dinner party right in the hospital room. Dad carried the take out food up 11 flights of stairs - he's motivating all of us to take the hard route to the the 11th floor. I was going strong until floor 6 when I tried it this evening, and by floor 10 I was using the hand rail.

Sue from work stopped in to say hi and brought a new lip gloss for Christine. Paulina, her PCP's med student, came for a long visit (a social call). She has been here several times and she and Christine really seem to get along well. Dad and I got to spend time with her for the first time really, and she is HILARIOUS. I was nearly crying I was laughing so hard at some of the stories she was telling and the ways she was telling them.

Medically, not much has changed for Christine in the last day or so. The mucosal sores seem to be unchanged / still pretty bad. She has an NP to answer questions for her now, rather than an entire team of residents. She is still using the nebulizer, and from what I observe this is helping her oxygen some though she seems to get short of breath more than before (meaning she really does need the nebulizer). Now that Christine is distinctly more mobile she is spending more time "organizing" - she has one set of drawers and two side tables (like the ones that lunch trays are served on) that she keeps in order. Still not talk of discharge as the steroids are still being tapered and the sores haven't healed yet.

Christine has a new nurse on tonight, which makes her a bit nervous because neither mom or I are staying. However, we have met her already and she seems like she will be great.