According to the National Heart Lung and Blood Institute there’s a list of general signs to look for when learning the signs of crisis for your sickle cell warrior. One would think gathering all of this information from different sources would properly prepare you to know your SCW’s body. However, living with them daily and having conversations with others SCW can teach you more than any organization out there. I believe only experience can teach you about your SCW’s body. I’ve learned a lot about my SCW’s body from reading but the most I’ve learned about her body is from living with her. To be a successful caregiver of your SCW you have to simply pay attention and take note.
My baby SCW, for example, skin becomes significantly hot where ever she is sickling. Her hematologist said he had not heard that and didn’t believe me until he felt it for himself. It’s like the fever appears only in the spot where it hurts but the rest of her body feels normal. This is how I know she is really experiencing pain. There were times when she was small that she just wanted some of the medicine because it tasted good. But the heat that appears in her area of pain lets me know she is really in pain. Now she better understands when and when not to ask for medicine because she is older.
All the information out there is great but its things the patient can tell you that an article can’t. It’s more of learning where they can have pain a crisis and to keep a record of when your SCW is sick. Keep an ongoing record of every new thing the doctor tells you about your SCW. We all know they can sickle anywhere bone is present but everyone is still different. My daughter tends to have crisis with no fever since she been three while others continue to experience high fevers. My daughter has also had pneumonia twice without fever too. Others, even without sickle cell, have fever with pneumonia.
During crisis, my baby does not like to have warm packs and others do. She, instead, she likes for me to comfort her with massages, putting a movie on Netflix and giving her favorite teddy bear to cuddle with. No book or article can teach you how to comfort them while they’re sick. You just have to pay attention and take good notes. You can’t be offended when the school doesn’t understand or new doctors don’t get it. You have to be comfortable telling them what you have learned because you are the expert. You are the one who has been by their side since day one. Before they could talk, you studied their bodies to look for signs of sickling. Be confident and know you are know more than someone on the outside looking in.