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.
Saturday, May 11, 2013
Friday, May 10, 2013
May 10th
From Christine: Today was a really good day.
Christine had her good friend Janie with her essentially all of today, and so she had a really great day. I wasn't with them so I'm not sure exactly what they did, but I think they spent some time outside, and I know Janie painted her toenails and finger nails, and I'm sure they spent lots of time talking. Janie is the one who started the fundraiser for Christine! She is much better at taking pictures than we are, so today's post will have lots of great images.
A picture of Janie and Christine outside.
Christine had her good friend Janie with her essentially all of today, and so she had a really great day. I wasn't with them so I'm not sure exactly what they did, but I think they spent some time outside, and I know Janie painted her toenails and finger nails, and I'm sure they spent lots of time talking. Janie is the one who started the fundraiser for Christine! She is much better at taking pictures than we are, so today's post will have lots of great images.
A picture of Janie and Christine outside.
A picture of Janie doing Christine's toes.
Applying awesome body butter, courtesy of Rachel.
Medical updates for the day are that Christine woke up in quite a bit of pain, it's been a bit of a rocky transition from the PCA IV pain meds to the oral pain meds. Her knee in particular was really bothering her in the morning, but the pain meds in combination with some ice gave her some relief. The swelling is about the same, and I think they were talking about maybe draining the knee tomorrow. Christine was explaining to Dad and I tonight that the doctors think the SJS reaction is basically happening in her knee, and there are layers of fluid (or something like that) inside the knee. It's apparently a very rare condition. Christine was wanting to taper the steroids faster after her discussion with Derm last night, so she asked this morning if she could hold off on the steroids until the doctors gave her an answer about lowering the dose. Unfortunately, nobody got back to her all day and its now 11pm and she still hasn't had today's dose of steroids. I just spoke with the nurse about it and it sounds like she is going to get dose tonight, and then tomorrow morning's dose will be given a bit later to space it out some. This could mean that Christine is wide awake most of the night as steroids cause insomnia, but luckily she has been sound asleep a lot of this evening so she has had a chance to rest.
Dad will actually be staying with her tonight and through a lot of tomorrow - a Dad sleepover hasn't happened yet! Christine is actually pretty excited about it, even though she is presently sound asleep while Dad has a late snack/dinner. I forgot to mention it last night, but there are signs of healing in her mouth finally. I can visually see the tip of her tongue looking better, and her lips are looking much better. She still has a long way to go and the swelling in her joints is a new issue... but its encouraging to see some improvement!
Thursday, May 9, 2013
May 9th
Well, I wish I could say that we saw some improvement today, but sadly not much happened to get excited about. Christine woke up with a very swollen knee that she couldn't bend, and so she had a very difficult time walking to the bathroom. She told me that it felt like someone had smashed her knee with a baseball bat. They called the doctors in, but nobody really had a good explanation. Her ankles and calves were more swollen as well. They tried icing everything with ice packs, but they heated up too quickly. Mom finally had the idea of getting her one of the cuffs that fills with ice that she had when her ACL was operated on, and while it didn't seem to do much for the swelling it did help some with Christine's discomfort.
Cindy came today, and she and Mom brought lunch back to share with Christine from Whole Foods. While they were away Christine had a bit of a maintenance catastrophe when a ceiling panel dislodged and nearly crashed on top of her! They had move her bed way over to prevent anything dirty from falling down on her while maintenance fixed the problem. After lunch the therapeutic touch lady came by, which is always so relaxing for Christine. I don't know what that woman does, but its great.
Rebecca and Lauren visited her tonight, and I came in around dinner time to take her down to the cafeteria to eat. Mom came with us because Tommy hadn't arrived yet (the two of them were going to go out to dinner). Unfortunately, as soon as we had sat down at the table to eat Christine started uncontrollably shaking. It was the most bizarre thing to witness. First I noticed that her hand was shaking quite a bit while she lifted her spoon, and I asked her if that had been happening all day. Not five minutes after that her entire body was twitching/shaking, so Mom and I scooped up her tray and wheeled her right back to her floor - needless to say we were a little freaked out. The resident came in and checked her out, the nurse was there. Nobody had a good explanation... after a dose of morphine (they took her off the PCA today so she has scheduled oral doses and a few allowable IV doses) and ativan Christine fell asleep and the shaking stopped. We aren't sure if the shaking stopped b/c of her sleeping, or because of the medication dosages, and nobody seems to have a good explanation as to why it happened in the first place. The whole ordeal left Christine exhausted and in pain because of all the activity in the muscles.
Here is a picture of her sleeping after the shaking episode. You'd never know she was uncomfortable by looking at it, but she sadly was and still is.
Rheumatology did come by today, and they suggested prescription strength Aleve for the joint swelling. They didn't seem to think that Christine's symptoms are another condition that has happened as a result of the SJS. They explained to Mom and Christine that even though the SJS trigger is now long sense out of her system, her body still thinks it needs to be fighting. They feel that the fluid in the legs and joints is similar to the fluid that was in the skin when it blistered and separated, and is just another manifestation of her body's autoimmune response that will improve with time. I do hope they are right, because its scary and difficult to watch a new symptom crop up each day. Christine deserves a break from all of this pain! Derm came by really late tonight and discussed the negative side effects of long term steroid use (e.g., Cushings disease) and it freaked Christine out a bit so I think there will be a discussion tomorrow about whether the taper rate can be sped up at all. It's a difficult balancing act for sure...
Christine will be spending the day tomorrow with one of her best friends Janie, so she is very much looking forward to that! Just keep swimming. I know how frustrated you are and how tired you are of being in pain Christine, but hang in there. We all love you.
Cindy came today, and she and Mom brought lunch back to share with Christine from Whole Foods. While they were away Christine had a bit of a maintenance catastrophe when a ceiling panel dislodged and nearly crashed on top of her! They had move her bed way over to prevent anything dirty from falling down on her while maintenance fixed the problem. After lunch the therapeutic touch lady came by, which is always so relaxing for Christine. I don't know what that woman does, but its great.
Rebecca and Lauren visited her tonight, and I came in around dinner time to take her down to the cafeteria to eat. Mom came with us because Tommy hadn't arrived yet (the two of them were going to go out to dinner). Unfortunately, as soon as we had sat down at the table to eat Christine started uncontrollably shaking. It was the most bizarre thing to witness. First I noticed that her hand was shaking quite a bit while she lifted her spoon, and I asked her if that had been happening all day. Not five minutes after that her entire body was twitching/shaking, so Mom and I scooped up her tray and wheeled her right back to her floor - needless to say we were a little freaked out. The resident came in and checked her out, the nurse was there. Nobody had a good explanation... after a dose of morphine (they took her off the PCA today so she has scheduled oral doses and a few allowable IV doses) and ativan Christine fell asleep and the shaking stopped. We aren't sure if the shaking stopped b/c of her sleeping, or because of the medication dosages, and nobody seems to have a good explanation as to why it happened in the first place. The whole ordeal left Christine exhausted and in pain because of all the activity in the muscles.
Here is a picture of her sleeping after the shaking episode. You'd never know she was uncomfortable by looking at it, but she sadly was and still is.
Rheumatology did come by today, and they suggested prescription strength Aleve for the joint swelling. They didn't seem to think that Christine's symptoms are another condition that has happened as a result of the SJS. They explained to Mom and Christine that even though the SJS trigger is now long sense out of her system, her body still thinks it needs to be fighting. They feel that the fluid in the legs and joints is similar to the fluid that was in the skin when it blistered and separated, and is just another manifestation of her body's autoimmune response that will improve with time. I do hope they are right, because its scary and difficult to watch a new symptom crop up each day. Christine deserves a break from all of this pain! Derm came by really late tonight and discussed the negative side effects of long term steroid use (e.g., Cushings disease) and it freaked Christine out a bit so I think there will be a discussion tomorrow about whether the taper rate can be sped up at all. It's a difficult balancing act for sure...
Christine will be spending the day tomorrow with one of her best friends Janie, so she is very much looking forward to that! Just keep swimming. I know how frustrated you are and how tired you are of being in pain Christine, but hang in there. We all love you.
Wednesday, May 8, 2013
May 8th
Today was a pretty rough day for Christine - she's been through a lot and new frustrations seem to be continually popping up. Not having an explanation for everything I think is one of the hardest parts.
She and Mom had breakfast together outside, which I think was a pretty excellent start to her day. After breakfast she took another shower, though was told that she needed to be careful about how many showers she took because it was hard to keep her PICC dressing dry. While in the shower her legs gave out, and the day just kind of went downhill from there.
I opted to not go in to see her today as I was getting quite a bit of work done at home, and she had a good friend Laura coming to see her for dinner. Mom left the hospital to go for a run and shower at my apartment, and she was going to have dinner with me (in the end she didn't because Christine had some new developments and she rightfully wanted to get back to the hospital). This was the first night that Christine had dinner "on her own!" She wasn't really on her own though, because Laura wheeled her down to the cafeteria and helped her get her meal. They ate dinner together like two normal friends :)
Once returning to the room though it became evident that Christine's skin was re-inflamed in a number of areas. Her face, neck, arms, and legs had red puffy/splotchy areas on them. Additionally, she was feeling short of breath, her knees were swollen, and she felt like she had "elephant legs" because her calves and ankles were so swollen. This was somewhat alarming to the nurse, so the doctor parade began. Christine had a couple of doctors from her internal medicine team stop by, her PCP stopped by, and Derm came by. Mom wasn't back to the hospital yet at this point, and Laura took the spotlight in terms of talking to the doctors and keeping Christine calm. She really got to experience first hand a lot of what I write about in this blog - the uncertainty, the worry/fear when new developments crop up, and the parade of doctors that follows. Thanks so much Laura for staying with her!
Christine wasn't really given a good explanation (or even a theory) as to what caused the new redness and the swelling. They think the breathing is still asthma as the nebulizer continues to help. They took several blood samples today, both from her arm and her PICC line, to do a variety of tests. I think they are testing general blood cell counts as well as inflammation - if inflammation is observed they will probably do a rheumatology panel. Additionally, they are going to have a rheumatologist come by hopefully tomorrow to consult, as I think there is some concern that her symptoms could be a result of something new that has happened after the SJS (for example, we heard reactive arthritis being kicked around as an option). Thinking about there being a different condition is kind of scary, after all she has been through does she really need to manage something new? At the same time, if there is something that would offer some explanation and perhaps have a more effective treatment/management regime, we might be thankful to hear it.
Other brief medical updates for the day are that pain is going to try to switch her to oral pain meds and take her off the PCA. They were going to do that today but opted not to as she was having a pretty high pain morning. Christine woke up this morning with the sensation of chest pain, so they did an EKG to check things out and luckily everything was normal. They think the pain might have been related to the tightness she experiences with the asthma. Derm didn't make any changes for the day, just said to "stay the course". The favorite eye doctor came by to check in, and said that her tear ducts were definitely suffering, but that her eyes otherwise looked fantastic. At least one area of her body has healed! We'll give the eye doc the gold star for taking such good care of her.
Dan and Anika came by after a lot of the chaos of the new developments had died down, and Christine was really thankful and excited to see both of them. They brought her an awesome care package (I think made with the help of Purvi). I didn't hear everything that was in it, but I remember hearing something about lip glosses/creams and brownies. How can you go wrong with those two things?
Here's a shout out to my sister, based on a print I found on the internet today. After I saw it I couldn't help but think of Christine. It is by Bluebird Design, at www.society6.com. Sometimes thinking too far into the details of the future is overwhelming, and the best thing to do is just put one foot in front of the other!
She and Mom had breakfast together outside, which I think was a pretty excellent start to her day. After breakfast she took another shower, though was told that she needed to be careful about how many showers she took because it was hard to keep her PICC dressing dry. While in the shower her legs gave out, and the day just kind of went downhill from there.
I opted to not go in to see her today as I was getting quite a bit of work done at home, and she had a good friend Laura coming to see her for dinner. Mom left the hospital to go for a run and shower at my apartment, and she was going to have dinner with me (in the end she didn't because Christine had some new developments and she rightfully wanted to get back to the hospital). This was the first night that Christine had dinner "on her own!" She wasn't really on her own though, because Laura wheeled her down to the cafeteria and helped her get her meal. They ate dinner together like two normal friends :)
Once returning to the room though it became evident that Christine's skin was re-inflamed in a number of areas. Her face, neck, arms, and legs had red puffy/splotchy areas on them. Additionally, she was feeling short of breath, her knees were swollen, and she felt like she had "elephant legs" because her calves and ankles were so swollen. This was somewhat alarming to the nurse, so the doctor parade began. Christine had a couple of doctors from her internal medicine team stop by, her PCP stopped by, and Derm came by. Mom wasn't back to the hospital yet at this point, and Laura took the spotlight in terms of talking to the doctors and keeping Christine calm. She really got to experience first hand a lot of what I write about in this blog - the uncertainty, the worry/fear when new developments crop up, and the parade of doctors that follows. Thanks so much Laura for staying with her!
Christine wasn't really given a good explanation (or even a theory) as to what caused the new redness and the swelling. They think the breathing is still asthma as the nebulizer continues to help. They took several blood samples today, both from her arm and her PICC line, to do a variety of tests. I think they are testing general blood cell counts as well as inflammation - if inflammation is observed they will probably do a rheumatology panel. Additionally, they are going to have a rheumatologist come by hopefully tomorrow to consult, as I think there is some concern that her symptoms could be a result of something new that has happened after the SJS (for example, we heard reactive arthritis being kicked around as an option). Thinking about there being a different condition is kind of scary, after all she has been through does she really need to manage something new? At the same time, if there is something that would offer some explanation and perhaps have a more effective treatment/management regime, we might be thankful to hear it.
Other brief medical updates for the day are that pain is going to try to switch her to oral pain meds and take her off the PCA. They were going to do that today but opted not to as she was having a pretty high pain morning. Christine woke up this morning with the sensation of chest pain, so they did an EKG to check things out and luckily everything was normal. They think the pain might have been related to the tightness she experiences with the asthma. Derm didn't make any changes for the day, just said to "stay the course". The favorite eye doctor came by to check in, and said that her tear ducts were definitely suffering, but that her eyes otherwise looked fantastic. At least one area of her body has healed! We'll give the eye doc the gold star for taking such good care of her.
Dan and Anika came by after a lot of the chaos of the new developments had died down, and Christine was really thankful and excited to see both of them. They brought her an awesome care package (I think made with the help of Purvi). I didn't hear everything that was in it, but I remember hearing something about lip glosses/creams and brownies. How can you go wrong with those two things?
Here's a shout out to my sister, based on a print I found on the internet today. After I saw it I couldn't help but think of Christine. It is by Bluebird Design, at www.society6.com. Sometimes thinking too far into the details of the future is overwhelming, and the best thing to do is just put one foot in front of the other!
Christine is surely not the only person in the world who has gone through something horrible, and there are many families out there suffering and losing people they love. My heart goes out to everyone who is in a position similar to Christine, or any family member who is standing by like we are and watching it all happen. Christine has unfortunately been dealt a rough hand, and can't seem to catch a break in life right now. I am so proud of her for striving to stay positive throughout it all though. I love her very much, and think she is amazing. I look forward to the day when she can enjoy being a 24 year old again.
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