May 13th

Today was actually a pretty good day overall! She spent the morning with Dad - they had breakfast in the cafeteria. I arrived around 12 for the "lunch shift" and hung out until 2pm when Grammy Pat arrived to spend the afternoon with her. Grammy Pat kindly bought Christine and her friend Laura dinner too! Christine says that the three of them had a good time chatting and that Laura and Grammy Pat really seemed to hit it off. Christine is now with Mom, ready for bed and wearing her new pink jonny, courtesy of Grandpa George and Linda! She really likes wearing these, and was excited when two new pink ones arrived in the mail today. She wanted to be sure that I gave a specific shout out to Grandpa and Linda for the johnnys! 

Medically, Christine is another 5mg down on the steroids, at 50mg now. They were going down 5mg every three days, but because of swelling and the risk of Cushings they are now decreasing 5mg every two days. The swelling in Christine's ankles and feet is essentially gone, which is really good. Christine unfortunately has noticed a few new sores on her lips (they haven't erupted through the skin so not as bad as last time) and a few in her mouth - we really hope that those don't flare up into something worse.   Her one knee is still very swollen and she can't bend it on her own or have anyone bend it for her, so they actually ordered an MRI today to have it checked out. She is probably having this done as I type, because they apparently can happen at all times of the night 'd I heard at 10:45 that she'd be getting it done soon. 

Also, a new set of pain docs came by today and actually told Christine she was on a lot of morphine and they were concerned that it no longer seemed to be able to mange her pain. They also said while pain meds themselves don't lower O2 in the blood, they do lower your respiration rate which in turn lowers your O2 levels. Really? We have to get that technical with our questioning? Anyway, they switched her fast acting morphine to dilaudid, a synthetic morphine. The advantage of this is that it is a new pain medication her body won't be "used to", and so she can take significantly lower doses. To our excitement, it has worked better to manage her pain today and her O2 sats have been between 93 and 96 without extra oxygen! 

There has been lots of new talk of discharge today. First we heard Friday or Saturday, but Christine just told me that Wednesday is now being s. While she still has a lot of apprehension about finally going home, I think she is much more ready at this point. Oh, related to this she wanted me to tell you all that she is walking with just the aid of arm crutches now (the ones with cuffs on your arms)! She actually went for several walks today, with the help of the crutches and a knee brace. 

Mothers Day 2013

May 12, 2013 - Happy Mothers Day 2013!

I have not posted on Christine's blog as Caroline has been doing an amazing job, with Christine's help. My sister has also posted once and her post also was great. I have wanted to post several times, but, have just not been able to do so. This has been such an emotional exhausting month that I have just been unable to sit and write.

I have worried so much about Christine's sister Caroline as she has taken on such a huge responsibility for Christine and her well being. Caroline's fiance David has also been such a solid source of support. It sometimes seem to me that this has just been more than they also should have had to bear as well.

Christine's dad, step dad and my husband Tommy have been there unfaltering in their support and there are no words that I can say to explain how much this has helped get us through this tough time.

I really cannot explain what life has been like since April 6, 2013. The first few days of Christine's illness were difficult enough. If I had had any idea of what was to come I would have never believed it. I was so frustrated with what was happening with Christine and I kept telling her that she needed to "find some way to get to the bottom of it". We all had dinner on Sunday night April 7th and Christine thought she had pink eye and a yeast infection. Little did we know what was brewing in her young, strong body! I cannot explain how it feels to be a mother of an SJS victim, and there is no way to explain how hard is has been to see my young, strong daughter suffer as she has.

Christine has been amazing through all of this. She has been dealt a very hard blow, but, she is young and strong and she will, as my husband continually says, "prevail". We have no idea what she will face in the short term or the long term, but, she is positive and strong and I believe that she will be fine.

It is really important for me to explain how much it means to me and to Christine that as awful as this illness has been, how much her ENTIRE family has rallied and has been there for both her and me. Her aunts, uncles, cousins, step-dads, step-mom, sisters, brothers, sister-in-law, co-workers, nurses, doctors and her grandparents have been there day in and day out. EVERYONE has been there for her. Christine loves her family and her friends and is such a social, happy, outgoing young women. She has been through so much and it is just amazing to me that she has been able to optimistic at all at times. She still makes me laugh, cry and look at so many things from "a different lens". She never ceases to amaze me.She has remained optimistic and positive despite all that she has been through.

We still have lost of worries and concerns but, she is so much better. I cannot thank family, friends, co-workers, doctors and others enough for the generosity, caring and support. Christine has beaten so many odds and she is so lucky.

This has been a Mothers Day like no other. Christine arranged for all of us to be at Mass General for lunch and, as I sat there watching her and her family I realized how lucky I am to have such an amazing family and such amazing children. Christine will recover fully which such love and support, there is no way she could not. It may be a long road, but, she will get there and, she will be that much better when this is all over. She so much wants to be a nurse, now she really will be ready. I know that she will be someday fulfill her dreams and that this experience will only make her be better than ever!

Thank you Christine for an awesome Mothers Day!

May 12th

This post will be quite short as our mom is going to do a longer Mother's Day guest entry before she goes to bed. The medical updates for today are pretty much the same as in the past few days. I looked in her mouth today, and from my standpoint it looks like there is a lot of healing happening. However, at lunch time today she did feel a few new sores form - to me, they look a little different than the ones that formed before (and not as nasty), though Christine says they feel the same to her. I am hoping that they stay small and don't become too painful. She still has a lot of pain and swelling in her left knee, though her right knee and ankles are continuing to look more normal. Her skin is actually looking very good, and a lot of the dark areas (from the blistering) are starting to fade. Her O2 sats are unchanged - still hovering around 90 during the day and in the high 80s while sleeping (requiring her to sleep with O2). We also noticed today while Donna was visiting that her heart rate is quite high - it seems to oscillate between 90 and 120 even while she is sleeping. I had noticed this a few days ago, and now that we have realized it hasn't gone back down we are going to ask the doctors to investigate this more thoroughly and see if it could be connected to the low O2 levels.

I was able to hang out with Christine for most of the afternoon today, and it was really nice to spend so much time with her. I've been very busy with work things lately and so have only got to spend a small amount of time with Christine every other day or so. Donna was there with me for the afternoon, and she actually performed Reiki - the therapeutic touch that Christine likes so much. Christine said Donna was amazing at it - it was even more relaxing when she has the MGH nurses do it. I don't totally understand how it works, but Christine says its her only 30 min of ZERO pain in the whole day. Incredible! It was neat to watch too. Dad and Christine had dinner together tonight, and Dad is on "night duty" again, bunking in on the cot.

I think that's it for my part today... stay tuned for more about our Mother's Day celebration from guest author Mom!

May 11th

Because Dad spent the night with Christine in the hospital, Christine woke up this morning to Dad watching her, which she found very cute. The two of them wheeled down to the cafeteria for breakfast, and Dad relayed everything that they ate to me later in the day so I think they had a good time :)

After hanging out for a bit Dad left Christine on her own so he could go and get her a new phone as hers has been acting up recently, He made a pit stop for deodorant as well. Dad picked up lunch from the cafeteria for the two of them, and Dad says he bought himself the heaviest salad yet!

Christine had two of her good friends and their significant others visiting today - Molly and Carl and Rebecca and David. I think they all hung out for quite awhile, giving Christine a nice distraction! Dad hung out with Christine the rest of the day until Mom and Tommy showed up to bring her dinner, and then Dad came to my house and Mom stayed on the "night watch."

There aren't too many new updates medically for today. They are still watching her one swollen knee, but have decided to wait another day before draining it. There seems to be a little bit of reduced swelling in the ankles and the better knee, they think because Dad suggested elevating her feet for most of today. Her O2 levels are still an on-going concern, and were even kind of low during the day today. She has slept with oxygen on the last couple of nights. It's unnerving to me that they aren't looking into this more - they seem to think there could be some fluid in the lungs and have talked about having a lung PT person come to help, but it hasn't happened yet. I'm pushing her to continue her incentive spirometer, but I'm not sure if it helped. Pain wouldn't increase her pain meds today because of the low O2 levels, because they said that even though the low levels weren't caused by the pain meds, the pain meds wouldn't help the situation.

Even with her joint pain Dad encouraged Christine to go on a walk today (now with her walker instead of the IV pole) and she did manage to go for one walk. Before the joint pain Christine had been walking four times a day, but in the last few days she has only gotten up to move about the room and go to the bathroom.

That's it for today! A rough day for Christine emotionally I think, but she really enjoyed her time with Dad and with her friends, and was happy to have Mom as her bunk mate tonight as well.