Mom's doctor urges us to consider the IV Remicade. We expressed our concerns, yet he feels that without taking the chance with the drug, mom will continue to deteriorate.
He urged the nurse to make an appointment with the dermatologist for today so that we could ask our straight questions. We were able to score a meeting for tomorrow around noon. Questions we will ask include: "What kind of quality of life would mom have if the drug works?", "What manner of death will happen for her if it doesn't work?" Underlying everything, Jennifer and I want mom to be comfortable. At ease. As pain free as possible. Whether we are allowing her to pass....or whether we entertain the thought of this 'wonder' drug. Jennifer and I spent much time researching the drug in the past 24 hours. It bothers us. We don't like that mom meets much of the criteria for NOT having the drug (infection prone, diabetes, etc.) Reviews from those who have taken the drug are all over the place. Some people claim its been there miracle drug and they are living life free from ailment. Others say it worked for a year and then it stopped. Some say it caused even more complications. And, all of these people, were not in such dire straits as mom's current status. However, if the drug works, she could experience (on average) a 50% reduction in symptoms. There are still so many questions. We have not made any final decisions. We have found through research the contact information of moms trusted dermatologist of the past, Dr. Russo. Katrina displaced him and we have searched for him today. Tomorrow morning we may make contact. He knows moms past and worked diligently to help her with her battles with psoriasis. In fact, he introduced us to multiple therapies, some lasting and highly therapeutic. We would greatly value his expertise and opinions. So, we hope to speak with him.
Meanwhile, a CT scan was ordered for her. This was to observe brain activity. Mom has only been responsive to pain. This has been so for days. However, today when I leaned into her and talked a bit more loudly- there was movement in her less than half-lidded eyes. She turned them towards me. When Jennifer spoke at her other side, her eyes moved towards her. Emotion overtook us. We called the nurse in. Dr. Del Toro rushed in, as well. We asked her questions. She moved her head. When asked if she was in pain, she moved her head 'no'. Later, I told her that Jenn and I are doing everything we can for her, asking all of the questions, and making sure she is comfortable- then I asked her, "Do you trust us?" She then nodded her head 'yes'.
It was a beautiful moment. Soon it followed another beautiful moment when we had to leave and kissed her and she lifted her arms high for a hug. And, we gave her one and told her we would be back at the next visiting hour. She smiled. And, that's where we are. Its 10 minutes to 9pm and we are waiting to go in again. We hope to experience the joy of seeing her and seeing her see us.
2 comments:
This moment you had with your mother really touched me; it is truly lovely, and I'm so happy for you and your sister that you were able to have it, espessially because I know that it must benefit her, emotionally and physically, as well as benefiting you guys, to be aware that that you're there and taking care of her and being such amazing daughters.
Also, I have to say, If it wasn't obvious already, clearly your mother did a good job with you both; you're amazing, patient, strong, loving girls. If I didn't have massive respect for you already, I certainly would now.
Thanks, Tina.
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