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!

May 4th (posted on May 5th)

Sorry for the delayed post, but last night we had a bit of a doggy emergency to attend to on our end and so I was unable to write the post before bed. For those of you who do not know, my fiance David and I have two miniature poodles - Ash, who we adopted in the fall of 2011, and Pepper, who we have been fostering since last October and just signed the adoption paper work for today! Pepper has a pretty lengthy medical history because he suffered from a serious case of Blastomycosis, a dangerous fungal infection that ultimately claimed his right eye. On Friday I noticed that he was acting quieter than usual, and Friday night we noticed that he whimpered when we picked him up under his belly. Saturday the symptoms continued and his appetite decreased, so we opted to take him to the emergency vet last night and have him checked over. The vet was able to tell us that the pain seemed isolated to his abdomen, and he didn't have much of a temperature either. We are now watching to see how he does the rest of today and tonight, and if he still is under the weather tomorrow we'll take him to the day vet for blood work and x-rays. Go figure that we have this happen while we are already worried and focusing on Christine! Now I'll be worried about Peps and Christine - they both need to heal up!

With that update out of the way, I will share the updates you area all eagerly awaiting regarding Christine's Saturday events. She spent the morning with Tom, who came from VT to visit and brought breakfast along. Tom stayed for quite awhile, and then Mom and Tommy and Grandpa John and Grammy Pat came by in the afternoon. Christine was thrilled to have step-sister Ruby as a surprise visitor! She took the train all the way from NYC to come and say hello, and came just in time to french braid Christine's hair after a washing by Grammy Pat and Mom. David and I came in the evening armed with lots of goodies - non-slip head bands, fluoride rinse, Cool Touch Kleenex, Nutrigrain bars, greek yogurt dip from COSTCO, Welches fruit snacks... We were planning to stay for a few hours last evening, but that happened to be in the midst of the height of our worry about Pepper and after consulting with his vet we opted to leave Christine after just a quick hello to take Pepper to the vet.

Grammy Pat sewed up PICC Line Puppy last night, so he's back in his daily occupation supporting Christine's arm. Gram also brought in some colorful scarves for Christine to use as sashes - the bathrobes she is wearing don't stay closed very easily and so having the sash helps her stay covered, and she says "makes her feel more feminine." It's the small things when you are dealing with something like this, right? Derm didn't allow Christine to go outside yesterday because it was too hot and sunny, but she is hoping to take a short trip outside this afternoon to a shady area. Grandpa John also brought in his famous pancakes for her to enjoy for breakfast today! Christine and her nurse walked all the way to the kitchen today to have them heated up, and I think that it was a great way to make Christine smile first thing in the morning.

They have upped her nerve medication because she doesn't feel much relief there yet, but apparently that can take a long time to "kick in". They have started tapering the steroids and she went down by 5mg yesterday. some of the ulcers in her mouth have opened up which is hopefully the first step to healing, but it still looks pretty gnarly in there. The blisters / areas of dead skin on her feet have finally opened and peeled as well, which causes her a lot of pain while walking. She had a bit of a breathing episode yesterday and had to use the nebulizer to help  - it did make her feel like she could breathe easier, but it isn't changing her O2 sats. Even though we have been pushing for an explanation for the decreased O2 sats, we haven't really gotten anything satisfactory yet. It sounds like they have ordered an x-ray, but we aren't sure when that will happen.

**Update! Katie and Phil stopped by yesterday evening as well and Christine said it was really great to have some time to talk with them! She's always so excited when she gets to see Katie :) 

Will update again tonight!

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! 

Another guest perspective, from our family friend Heather

Heather is our Aunt Cindy's very best friend, and she wrote an entry on Christine on her own blog.  I just finished reading it, and I wanted to share it here for all of you. Heather is so strong and supportive, and a wonderful friend.

http://reluctantsurvivor.blogspot.com/2013/05/life-universe-everything-christine-part.html