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!