May 16th

From Christine: I am so happy to be home, and so thankful for everyone's support! It's unbelievable how much you have all been doing for me. We'll be keeping up the blog, and I will hopefully take over in the next few days. Also, my very kind step-father had to go to CVS twice for over 2 hours each time!

Christine came home after lunch today!!! She and Mom came by my house on their way home to pick up a few of her things. She was surprised to figure out how much the sun HURT her skin. She knows she is supposed to stay covered, but even her exposed calves and forearms were hurting, she said it felt like acid on her skin even though she only took a few steps from the car to the house. When she went back out to the house we wrapped her in a sheet and used an umbrella to block the sun. She has a lot of long sleeve SPF clothing (and a hat!) on order so she will be more comfortable when outside.

She is all set up in Andover, with oxygen and a nebulizer for nights and breathing, and with all of her medications. There were a few medication snafus because the hospital forgot to write the prescription for a few things (like the nebulizer meds and her magic mouthwash). Tommy had to take multiple trips to CVS after multiple calls to the doctor to try to get it all sorted out. She will be sleeping on the second floor, but its just a few steps up because its kind of a split level design. She has extra pillows for the bed so she can prop her head and feet up like she was doing in the hospital. For during the day they set up a comfy recliner for her on the "porch," the fully finished and enclosed (normal house not outside living space) eating and sitting area where people spend most of their time at my grandparents house.

For dinner Mom and Christine got all dressed up to go next door to Dan and Purvi's house, where they were having a "hena party" for Purvi's sister who will be getting married this weekend! Christine wore real clothes for the first time and said to tell you all that she felt like a million bucks.

I advised against it, but Christine had her heart set on having hena done. Luckily, she chose to have it on her feet where the rash was the most minimal. 

We'll let you know tomorrow how the night goes! 

May 15th

Dad and Christine started their morning by having a "lovely, romantic breakfast together" in the cafeteria, enjoying breakfast pizzas! After breakfast they hung out for awhile, waiting for the big "all hands" meeting scheduled for 2:15 where all of Christine's doctors would talk to us about discharge logistics, plans, visits, medications, long term issues, restrictions, etc. Dad says to tell everyone that she had a "pillow fight" today - aka, a heated discussion about what pillows she will use while she is at home (with family, not with doctors). She and Dad also did some PT and walking today - and stairs! Big news for the day is that the MRI came back clear - lots of inflammation but no necrosis, phew.

Here is a link to the video of her doing stairs, I can't seem to get it uploaded directly into the blog on the hospital internet: https://www.facebook.com/video/video.php?v=4680031009685

The afternoon meeting went pretty well, though they decided NOT to discharge Christine this evening. They were concerned about the fact her O2 is still dropping in the night, and apparently the new pain meds she is on could in fact make it worse. They would like to try to adjust her bedtime medications as this is the only time that her O2 really drops below 90, so its possible she is just taking too many at once. To monitor the recommended changes, they wanted to keep her overnight one more time. More than likely, while she is have to sleep with O2 while at home to be safe.

Hopefully she will be good to go tomorrow morning! She was very bummed after she heard that she wouldn't be going home today, but she had visitors in the evening to make up for it. Katie and Don came by, and Katie decorated her crutches for her with awesome duct tape! Rachel is here chatting now, and Mom, Tommy, Christine and I will be eating dinner together shortly. Mom will stay with her tonight, and we are keeping our fingers crossed that there aren't any big issues with the O2!

Just so everyone knows, we'll be continuing the blog even after she is home as there will still be updates about her recovery! It may not be daily as there might not be as much to write about, but we will post whenever we have something interesting to say :) 

May 14th

From Christine: Today was a magnificent afternoon. 

Today was largely an uneventful day. She had some visitors from work, Mom spent the morning with her, Dad arrived around lunch time to spend the rest of the day and overnight with her, and Grandpa stopped by for awhile in the afternoon. They are still planning on discharging her tomorrow! However, because of various logistical issues it could end up being Thursday instead. Grandpa has started bringing some of her things back to the house, as she, Mom, and Tommy will be staying with Grammy Pat and Grandpa John to be close to MGH.

Yesterday I wrote about how they switched some of her pain meds - they switched her short acting pain meds yesterday, and today they switched her long acting. She says they have been working much better for her - instead of her pain being a 7 or 8 its been more like a 4. She also is taking quite a bit less than she was of the morphine I think, which is a good thing. Even though Mom said it looked like her O2 levels were up during the day yesterday, they still dropped quite low last night. She may have to go home with O2 and a probe for night time if they are still low tonight.

Her favorite PCP (the one she sees even when she isn't hospitalized) came by and talked with her and Dad for a long time about what she'll need while at home, how to get it, what she could do to help, etc. She made Christine feel SO much better, and like going home will be smooth and like she'll have or be able to get everything she needs. She will have PT coming daily as well as a visiting nurse, among other things.

We also learned more about why they are taking an MRI of her knee, which actually didn't end up happening last night but did happen tonight. It sounds like steroids can occasionally cause necrosis of the joints, and so they want to check her knee to figure out if its just "normal" inflammation or if there is something more serious happening within the joint itself. It's kind of a scary concept to think that the tissues in her knee could actually be dying, so we really hope that is not what they find!

We will certainly keep you all in the loop about her potential discharge tomorrow and how things go as she transitions to home life.

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.