From Christine: I got the PICC line today, and I'm doing a lot better.
This afternoon was filled with a lot of pain, and Christine was definitely feeling discouraged. This is a very slow process and its hard to really see any progress, especially for her. The eye doctor came by, and said that things were improving. The whites of her eyes are less red, and he thinks both eyes have "turned a corner" in terms of healing. At this point in time, he doesn't expect there to be any long term eye damage.
The Derm team came in after the eye doctor, and they were encouraged by the eye doctor's report. They explained that the mucous membranes heal the fastest, so if the eyes were improving they expected to see improvement in other areas soon as well. They felt that many of the blisters had darkened, deflated, and started to reattach to the skin. Derm talked to her more about nutrition, tended to some of her bandages, and found some special Vaseline gauze more suited for the blisters and rash on her face.
After Derm came the PICC team, and they explained both the risks and the benefits of having the PICC line. Christine will need an IV for quite some time, and it has to be moved every 96 hours. "Real estate" is hard to come by on her arms as the rash is everywhere. Additionally, she has blood collected every day. Having the PICC line will eliminate the need for her to be continually "stuck." We decided to put it in, and Mom, Tommy, and I waited nervously in the hallway while the procedure was completed. Things went well though, and her spirits were significantly improved after they finished as she knew it would make things easier going forward.
She managed to eat half of a grilled cheese and half of a cup of chocolate milk shake for dinner. Currently she is going through her nightly medication routine with the nurse, and then the nurse will get her ready for bed in terms of bandages and bathroom runs with the help of Mom. I am about to head home for the night, but will be back early tomorrow morning. Hopefully, tomorrow will be a better day.
Wednesday, April 17, 2013
April 17, 3:30pm
From Christine: Today has been a rough day.
Even though yesterday was looking up for Christine, today has been a tough day and its hard to see the progress that we saw yesterday. She woke up and the IV nurse put an IV in her wrist, which caused her excruciating pain and really limited her already limited mobility. There has been discussion all day about putting in a PICC line so that she doesn't have to keep getting stuck when they draw blood and so that she doesn't need new IVs all of the time. The PICC line has its own risks, such as potential irritation to her blistered skin and infection. It is undecided yet if the PICC line will be inserted, but she did just recently have the wrist IV taken out and one on her other arm is being used instead.
On top of this morning's IV issues, her Vaseline gauze dried out overnight. The attending Dermatologist had thought they may survive the night, but that did not turn out to be the case. When she woke up they were all sticking to her skin and causing unbearable pain. The Derm resident came in to help with the bandage change and they tried sterile water to release the stuck gauze and she almost passed out from the pain of the water. She has has a superb nurse today though and she talked soothingly to Christine while the bandages were being changed and got her to concentrate on her breathing so that she regained some strength. They finally were able to release the old bandages and put on new ones, and get her back into bed.
After the bandage change Grammy Jane and Chip stopped by to say hello, and Christine asked to hold Grammy Jane's hand for a minute. Grammy sat in the room for quite some time, while Chip napped in the hallway (or so he says). I had lunch with them while she rested, and then they came back to say a quick goodbye. Things have been a bit better since then, and Christine ate a small portion of mac and cheese for lunch, and has since had part of a milkshake blended with some protein powder.
The doctors are starting to talk about nutrition now, as protein and vitamins/minerals are really important in the healing process and Christine is having a hard time eating because of the pain in her mouth. They don't want to give her anything through a feeding tube or through her IV though as that has its own risks - they say that its best for her to eat on her own so we are doing our best to think of nutritious and healthy foods that she can easily eat.
She slept through the night last night, but was anxious about not being able to see if she needed to call for the nurse. Her great night nurse put a tab on the nurse call button on her bed so that she could feel for the right button should she need anything, and that made Christine feel better. Her O2 levels are looking great, reading 100 as I type. Her blood pressure has been up, but it hasn't concerned anyone and they said its likely a result of her high pain levels. Some areas of her skin are looking better - instead of looking bright read with puffy blisters they are more brown in color and the blisters have deflated. At the same time, the skin on her face is still quite red and is starting to peel, and she has areas on her body that are still covered in large blisters.
That's all for right now... Christine is currently resting, and generally feeling very uncomfortable. She says to let you know that while she can't really text or respond to messages, she is hearing them all and loving the support.
Even though yesterday was looking up for Christine, today has been a tough day and its hard to see the progress that we saw yesterday. She woke up and the IV nurse put an IV in her wrist, which caused her excruciating pain and really limited her already limited mobility. There has been discussion all day about putting in a PICC line so that she doesn't have to keep getting stuck when they draw blood and so that she doesn't need new IVs all of the time. The PICC line has its own risks, such as potential irritation to her blistered skin and infection. It is undecided yet if the PICC line will be inserted, but she did just recently have the wrist IV taken out and one on her other arm is being used instead.
On top of this morning's IV issues, her Vaseline gauze dried out overnight. The attending Dermatologist had thought they may survive the night, but that did not turn out to be the case. When she woke up they were all sticking to her skin and causing unbearable pain. The Derm resident came in to help with the bandage change and they tried sterile water to release the stuck gauze and she almost passed out from the pain of the water. She has has a superb nurse today though and she talked soothingly to Christine while the bandages were being changed and got her to concentrate on her breathing so that she regained some strength. They finally were able to release the old bandages and put on new ones, and get her back into bed.
After the bandage change Grammy Jane and Chip stopped by to say hello, and Christine asked to hold Grammy Jane's hand for a minute. Grammy sat in the room for quite some time, while Chip napped in the hallway (or so he says). I had lunch with them while she rested, and then they came back to say a quick goodbye. Things have been a bit better since then, and Christine ate a small portion of mac and cheese for lunch, and has since had part of a milkshake blended with some protein powder.
The doctors are starting to talk about nutrition now, as protein and vitamins/minerals are really important in the healing process and Christine is having a hard time eating because of the pain in her mouth. They don't want to give her anything through a feeding tube or through her IV though as that has its own risks - they say that its best for her to eat on her own so we are doing our best to think of nutritious and healthy foods that she can easily eat.
She slept through the night last night, but was anxious about not being able to see if she needed to call for the nurse. Her great night nurse put a tab on the nurse call button on her bed so that she could feel for the right button should she need anything, and that made Christine feel better. Her O2 levels are looking great, reading 100 as I type. Her blood pressure has been up, but it hasn't concerned anyone and they said its likely a result of her high pain levels. Some areas of her skin are looking better - instead of looking bright read with puffy blisters they are more brown in color and the blisters have deflated. At the same time, the skin on her face is still quite red and is starting to peel, and she has areas on her body that are still covered in large blisters.
That's all for right now... Christine is currently resting, and generally feeling very uncomfortable. She says to let you know that while she can't really text or respond to messages, she is hearing them all and loving the support.
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