Today Emily had her labs. It was the first day they stopped using her port to get her blood. To remind you, she has an implanted port that can be used to attach an IV or to draw blood, it goes directly to her heart. The port is really helpful if you are getting IV medication as often as Emily was, and it's a tremendous convenience to have it for blood draws. Now since she is not getting as much IV medication they want to remove it, because there is always the danger it could cause a blood clot, or become infected. Since Emily has had a blood clot, it makes them want to remove it even sooner.
Emily has been really worried about stopping the port. It means they have to take blood from her arm just like the rest of us, but she still needs to do it once a week. She has a lot of anxiety about the needle. Today Tracy said she was refusing to get out of the car or go into the clinic, and was crying and really scared. The GREAT news was once she got in, they were able to draw her blood on the first try and she did it without numbing cream. They have a guy, I am not sure of his title, but all he does is blood draws and IV starts on kids, and is really good at it. He said Emily has a couple of nice veins to work with.
This all means that she will probably have surgery in the near future to remove the port. We can probably wait until after Christmas, but I'm not sure.
Once we get into a routine Emily can have her weekly blood draws done at an external lab if we want. One much closer to school ideally. That way she'll only need to go to Stanford once a month.
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4 comments:
Emily you are such a trooper. I am very proud that you were able to let them draw blood this afternoon. I know you will understand that your mom and dad and all of your doctors only want whats best for you. I am happy to hear that there seems to be an expert who knows just how to do these kinds of things for children. You are like almost everyone else I know - I don't really think many people like needles. My grandaughter just broke her wrist a week ago and as you might suspect the worst part for her was having to get a shot to numb her wrist so that they could set it. We talked a lot about this and we discovered that if she didn't watch or look at the needle and then if she squeezed my fingers as tight as she could she barely felt anything and the procedure was over before she new it. Unfortunately for me, I discovered she is really strong and really squeezed my fingers so hard I was the one who yelled "ouch". I will keep you in my thoughts and know that you will figure all of this out. You are so brave. I hope to see you soon.
mrs. breit
Dear Emily -
I am sorry you were so scared about getting the blood draw yesterday, but so glad you continue to be brave and strong. You have had to deal with much, much more than most adults ever have to in their whole lives. Hang in there and squeeze your mommy or daddy's hand when you have to have a blood draw, just like Mrs. Breit's granddaughter did. I love you, sweetie.
Love, Grannie
Hmm couldn't you just flush the port regularly (at home or clinic) to keep it clot-free? That is what we do with Ricky's, but then, he hasn't had a clot before!
He is always perturbed when they draw through his arm or finger... "Why can't you use my port?" Basically the lab people are not allowed to access it and we'd have to have the nurse do it... Too much trouble!
So sorry about the blood being drawn, but what a brave girl, and hurrah for the peach fuzz growing on her head.
I'm so glad that Emily had a terrific birthday and that things have been going so well ever since.
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