In case you didn't see it, check out the other blog post for today that was written by our Aunt Cindy - she did a fabulous job! Aunt Cindy was here from 10-2 today, and it was great t have her help, company, and words of encouragement. I agree with everything she said in her post about how nice its been to get to know each other better during our hours in the hospital room. It's tragic that Christine is going through this, but it has undoubtedly strengthened relationships and personalities in the process.
Christine spend her second night alone last night with one of her other favorite nurses, and from what she told me everything went smoothly. Two bathroom breaks, and I think she is enjoying having the time to herself before she goes to sleep and when she wakes up. It would be so hard for me to be in one room for 3 weeks straight, and to never have any alone time! I arrived around 8am so that I could be around for as many of the doctor visits as possible. I was pleased to see that Christine is looking much less "red" today and is a healthier pink tone. Her lips are also more healed than even yesterday. The inside of her mouth is still full of sores though, so the process is not over yet. She also feels discomfort in her bladder area when urinating again, which is a bit worrisome considering she is still on the antibiotic for her UTI. We've alerted the nurse and they will watch it / follow up. I know that I'm a "worrier", but its really hard not to be concerned when new things crop up - and hospital bacteria are really scary.
The pain doctors came by today and are going to increase her the nerve specific pain meds because she doesn't feel too much of a difference in that department yet. We also discussed her O2 sats a little bit because they are lower than they were a week or two ago, though nobody seems concerned. I thought maybe they were from the pain meds, but the pain docs said that would only be the case if the meds were knocking her out, which they aren't. They recommended she use her incentive spirometer (a breathing exercise machine thingy) frequently throughout the day because her O2 sats may be low as a result of being in bed so much and using her lungs less. We have done that several times today, so we'll see if there is any long term improvement and will continue using in it in the days to come.
First the Derm resident came by, and then while I was away for an hour to walk my dogs the Derm resident came back with her attending and talked with Christine and Aunt Cindy. Generally it seems like they think her skin is looking less inflamed, and that some of the larger connected red areas are dispersing and becoming just isolated spots. They also noted the improvement in her lips, though agreed the inside of her mouth wasn't looking any better. They have decided to lower her steroid dose for tomorrow by 10mg, with the plan to lower it 10mg more the day after that. They will watch carefully for any negative changes, but they don't want to prolong the use of steroids as this can have other negative health effects that are pretty scary. People here say that steroids are the best worst drug ever.
Christine was pretty excited today because nurse Jena and Aunt Cindy made a team effort to wash and condition her hair (twice) again today using the special bed washing basin that they call the "pork chop" because of its shape. Her hair is looking nice and clean and all together normal now - yay for no more grease or scalp peeling! Christine had a couple of coworkers stop in today as well, and the stress person came by to do another "touch therapy" session. We learned more about it today, and it sounds like she tries to "ruffle" the energy layer that exists 2-3 inches around Christine's body (or anyone's body). It sounds very ambiguous, but Christine says she notices an unbelievable difference when the woman finishes. Kind of neat!
Uncle Chip and Sabrina drove down wearing Joe's Pond t-shirts as "team Christine". It was so cute! They brought a third shirt for her. Grandpa John also came in later in the day, and the three of us enjoyed a cafeteria dinner in the room. Christine and I had chicken caesar salad and a roll, and Grandpa had a pork chop and then some of the dinner that came on Christine's tray that she didn't want. The nutritionist stopped in at dinner time and is going to ask Derm if Christine can have a "normal diet" sent up through nutrition rather than the "dry soft foods" she is offered right now. There are only so many tuna/chicken salad sandwiches grilled cheeses, and mac and cheese dishes you can eat. I am sitting with Christine until she starts to get ready for bed, then I'll head home and she'll stay here on her own again. Currently she is napping - I think it has been a long day!
Wednesday, May 1, 2013
May 1st: A Matter of Perspective
Caroline and Christine have asked me to post on Christine's blog today to give you a new perspective. They felt that it would be interesting to have a "guest" blog about how I have felt during Christine's illness and recovery. I am Christine's aunt. Her mother Amy is my favorite (and only) sister. There are 6 years between Amy and I, and while we were not the closest of sibling growing up, we have become very close as adults.
For those who know me, you may realize that asking me how I "feel" will probably get you a large blank page. I am not an overtly emotional person, and in general, approach life from a more pragmatic and logical perspective. What I will tell you about though, is what I "see" and what I have "seen" over the last several weeks.
For me, it has been all about perspective. It often is, whenever I have had a family member diagnosed with something scary, unknown and frightening. The first thing I always want to know, is different from my family's. They are often buried in the emotions that such scary things bring out. I always want to know "now what?". "What are the doctors saying?" "What are we going to do from here?" I can't look back and wish that things had not happened. I can't look back and say "Where did we go wrong?" or "What could we have done to avoid this?". I am all about "What we do now?" For Christine, it was very scary in that, no one could say what would happen next, or what the outcome would be. The first 10 days or so, all the focus was on the uncertainty. The condition had to run its course, and all anyone could do was treat each symptom as it arose and wait.
Christine's doctors and nurses were doing everything they could to keep her stable, Her mom and her sister were by her side helping make decisions with her medical team. All I could do was wait and pray. First thing I did, Facebook. I posted up on my wall asking my family and friends to pray for Christine. (That, and ask my wonderful husband to send her flowers...his favorite thing to do when someone is ill!)
Once Christine was more stable, and able to have more visitors, I started going in to see her. I try to bring her things she craves, Iced Chai, Chili, Croissants, "Real" Syrup, or favorite foods from Trader Joe's. Simple things to keep her focusing on the good things. I tried to tell her the specific things I could see that looked better. As she improved, I set aside several days a week to go in to see her. Usually on my own, sometimes with my daughter Katie or my husband Don. The last 2 weeks, I have gone in on my own to spend some mornings with Christine and anyone else who was there with her, and this is my perspective.
Plain and simple, my niece Christine is AMAZING. I don't know how she has managed to keep such a positive attitude through this whole ordeal. I know she has had some very low moments and more than one total meltdown, but beyond that, she has taken the time to look deep inside herself and hold on through one of the most horrible experiences I have ever seen. The depth of her strength seems to be bottomless. I always knew she was strong, but this goes way beyond that. She is thankful to the nurses who help her everyday. She is understanding to the family that sits with her day after day. She listens to the doctors and tries to be an active participant in her health care. I know there are days she wants to scream at them all, but she still thanks them for all they are doing. (I know I would have wanted to scream if one more person told me to "stay strong" or "you are looking so much better!") She is taking this all in as a learning experience about herself, her future and how she wants to be as a nurse when she finished nursing school.
In addition to that, my sister Amy and Christine's sister Caroline are also AMAZING! They have put their personal lives on hold as much as humanly possible to be with Christine day and night. They have listened to the doctors, asked questions and helped Christine through her lowest moments. They have also been able to let go the last few days and let Christine "fly solo" at night. I think this has been a good change for them and for Christine. I always knew the women in my family were strong together, but now I KNOW it!
Beyond that, I LOVE all the support Christine has had. Beyond my sister and Christine's sister, those of you that know us know that we have a very large and very "extended" family. Some of them have driven 5-6 hours just to spend a short visit with Christine to encourage her. Others have been playing chauffeur to others or been a personal shopper or favorite food go-getter. Her friends and coworkers stop in to visit as much as they can. Many have not been able to stay long, but they all do what they can to keep her spirits up. Her room is filled with beautiful flowers, pictures, cards and care packages from them all. Her nurses have just been so supportive and gone above and beyond to help her feel "herself", washing her hair and helping her get around.
From my perspective on the edge of all this, my visits for the last few weeks have been relaxing. Even though Christine has a long road ahead of her dealing with the lingering issues that SJS has left her with, some of which are very painful, it has been wonderful to just sit with her. Early on, she sometimes was sleeping, and I could chat with my mom, my sister and Caroline. I have had a chance to chat with them all on a deeper level than our busy lives normally allow. I have been able to watch the progress of Christine's healing and give her my view on it all.
Today, Amy was home working and Caroline and I spent the morning with Christine. While Caroline was home walking her dogs, Christine and I were able to chat about what she wants for herself and her future. I found myself awed, and even emotional on the way home as I considered HER perspective about all this and how just a few weeks ago, I was afraid that she might not pull through this ordeal. How could I ever have doubted her ability to persevere and move forward! Like I said, Christine, her family, friends, and my own family are...AMAZING.
For those who know me, you may realize that asking me how I "feel" will probably get you a large blank page. I am not an overtly emotional person, and in general, approach life from a more pragmatic and logical perspective. What I will tell you about though, is what I "see" and what I have "seen" over the last several weeks.
For me, it has been all about perspective. It often is, whenever I have had a family member diagnosed with something scary, unknown and frightening. The first thing I always want to know, is different from my family's. They are often buried in the emotions that such scary things bring out. I always want to know "now what?". "What are the doctors saying?" "What are we going to do from here?" I can't look back and wish that things had not happened. I can't look back and say "Where did we go wrong?" or "What could we have done to avoid this?". I am all about "What we do now?" For Christine, it was very scary in that, no one could say what would happen next, or what the outcome would be. The first 10 days or so, all the focus was on the uncertainty. The condition had to run its course, and all anyone could do was treat each symptom as it arose and wait.
Christine's doctors and nurses were doing everything they could to keep her stable, Her mom and her sister were by her side helping make decisions with her medical team. All I could do was wait and pray. First thing I did, Facebook. I posted up on my wall asking my family and friends to pray for Christine. (That, and ask my wonderful husband to send her flowers...his favorite thing to do when someone is ill!)
Once Christine was more stable, and able to have more visitors, I started going in to see her. I try to bring her things she craves, Iced Chai, Chili, Croissants, "Real" Syrup, or favorite foods from Trader Joe's. Simple things to keep her focusing on the good things. I tried to tell her the specific things I could see that looked better. As she improved, I set aside several days a week to go in to see her. Usually on my own, sometimes with my daughter Katie or my husband Don. The last 2 weeks, I have gone in on my own to spend some mornings with Christine and anyone else who was there with her, and this is my perspective.
Plain and simple, my niece Christine is AMAZING. I don't know how she has managed to keep such a positive attitude through this whole ordeal. I know she has had some very low moments and more than one total meltdown, but beyond that, she has taken the time to look deep inside herself and hold on through one of the most horrible experiences I have ever seen. The depth of her strength seems to be bottomless. I always knew she was strong, but this goes way beyond that. She is thankful to the nurses who help her everyday. She is understanding to the family that sits with her day after day. She listens to the doctors and tries to be an active participant in her health care. I know there are days she wants to scream at them all, but she still thanks them for all they are doing. (I know I would have wanted to scream if one more person told me to "stay strong" or "you are looking so much better!") She is taking this all in as a learning experience about herself, her future and how she wants to be as a nurse when she finished nursing school.
In addition to that, my sister Amy and Christine's sister Caroline are also AMAZING! They have put their personal lives on hold as much as humanly possible to be with Christine day and night. They have listened to the doctors, asked questions and helped Christine through her lowest moments. They have also been able to let go the last few days and let Christine "fly solo" at night. I think this has been a good change for them and for Christine. I always knew the women in my family were strong together, but now I KNOW it!
Beyond that, I LOVE all the support Christine has had. Beyond my sister and Christine's sister, those of you that know us know that we have a very large and very "extended" family. Some of them have driven 5-6 hours just to spend a short visit with Christine to encourage her. Others have been playing chauffeur to others or been a personal shopper or favorite food go-getter. Her friends and coworkers stop in to visit as much as they can. Many have not been able to stay long, but they all do what they can to keep her spirits up. Her room is filled with beautiful flowers, pictures, cards and care packages from them all. Her nurses have just been so supportive and gone above and beyond to help her feel "herself", washing her hair and helping her get around.
From my perspective on the edge of all this, my visits for the last few weeks have been relaxing. Even though Christine has a long road ahead of her dealing with the lingering issues that SJS has left her with, some of which are very painful, it has been wonderful to just sit with her. Early on, she sometimes was sleeping, and I could chat with my mom, my sister and Caroline. I have had a chance to chat with them all on a deeper level than our busy lives normally allow. I have been able to watch the progress of Christine's healing and give her my view on it all.
Today, Amy was home working and Caroline and I spent the morning with Christine. While Caroline was home walking her dogs, Christine and I were able to chat about what she wants for herself and her future. I found myself awed, and even emotional on the way home as I considered HER perspective about all this and how just a few weeks ago, I was afraid that she might not pull through this ordeal. How could I ever have doubted her ability to persevere and move forward! Like I said, Christine, her family, friends, and my own family are...AMAZING.
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