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.

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!