The days since transplant have been wonderfully uneventful. We have continued to ask ourselves if we are really here, did they give her the chemo, is it working?
Last night was my first night of concern as Clara is having an allergic reaction to something. She is having a hives like flushing of the skin but it is not raised bumps. Last night, it was just on her neck, back and lower back.
Unfortunately, she is having the same thing exactly 12 hours later but worse. It is all over her face, torso, privates, and thighs. She does have a significant amount of itching but, true to her character, is not complaining.
It does exhibit with extreme excitability (she seemed to think she was stronger and was accomplishing more in the crawling/standing skillset last night), and then follows with fitful but long hours of sleep. She was kind of showing both at the same time for a while last night. It is creepy to see her sleeping with her eyes unfocused and open and then suddenly focus on something in the room as if she was actually awake.
Below is a picture of her face and neck at the moment.
Her mucositis is getting worse and they may give us a PCA soon to giver a constant small dose of pain meds. We would be able to just push a button if she needed a bit more throughout the day but it would also keep us from overdosing. Don't think she needs that quite yet.
We've also been told that this is when her cells will become more "leaky" and we will see more swelling. We will be looking for weight gain due to swelling, fevers due to infection or simply being without any white cells at all in her body, and will be expecting more transfusions of red cells and platelets as her counts are consistently dropping as they die and she has no marrow to replace them.
We are still to far away to really know, but to answer the question that some of you have begun asking, we will not be going home until at least Day +30. That hasn't kept us from anticipating the day and enjoying the countdown!
Last night was my first night of concern as Clara is having an allergic reaction to something. She is having a hives like flushing of the skin but it is not raised bumps. Last night, it was just on her neck, back and lower back.
Unfortunately, she is having the same thing exactly 12 hours later but worse. It is all over her face, torso, privates, and thighs. She does have a significant amount of itching but, true to her character, is not complaining.
It does exhibit with extreme excitability (she seemed to think she was stronger and was accomplishing more in the crawling/standing skillset last night), and then follows with fitful but long hours of sleep. She was kind of showing both at the same time for a while last night. It is creepy to see her sleeping with her eyes unfocused and open and then suddenly focus on something in the room as if she was actually awake.
Below is a picture of her face and neck at the moment.
Her mucositis is getting worse and they may give us a PCA soon to giver a constant small dose of pain meds. We would be able to just push a button if she needed a bit more throughout the day but it would also keep us from overdosing. Don't think she needs that quite yet.
We've also been told that this is when her cells will become more "leaky" and we will see more swelling. We will be looking for weight gain due to swelling, fevers due to infection or simply being without any white cells at all in her body, and will be expecting more transfusions of red cells and platelets as her counts are consistently dropping as they die and she has no marrow to replace them.
We are still to far away to really know, but to answer the question that some of you have begun asking, we will not be going home until at least Day +30. That hasn't kept us from anticipating the day and enjoying the countdown!
2 comments:
Just wanted to share...
Lamentations 3:22-23
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness."
May His great mercies...the incredible donor, the kind nurse, the bye-bye from our precious Clara....may these little compassions renew your spirit and strength sweet Brooke!
Wishing we could give you the great big hug you deserve but hoping you feel the love and prayers we send from afar!
Poor precious thing! She is such a trooper, as are you two. LOVE Katie's scripture reference above. It seems all consuming, but you are NOT consumed. He provides something to refresh you each day...most often from the delightful treats Clara extends. Precious. Just precious.
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