Update



Our human pin cushion. Poor baby. An IV in one arm, PICC line in the other, and a tube down her nose and into her tummy.
Today she said that if anyone even thinks about putting in a catheter, she is out of here. she threatens, but you know what- she would take it like a champ, just as she does everything else.



The procedure in the Operating Room to place the PICC line went very well. It is shocking to see the photos of how they thread the catheter into her vein and use ultrasound to place the PICC. Tonight, her nurse removed the wrap and we saw that her gauze was soaked through in blood, which is not normal, so a team of nurses came into the room and accessed. Liz is having pain at the site and had to endure the nurses removing the Tagaderm and gauze, so that new gauze could be placed. They are pretty sure that her little incision was made just a tad too big and is the cause for the bleeding, as opposed to her having a problem wiht the PICC itself. So far, there seems to be no new bleeding. Liz does not complain easily at all....but she is having pain tonight and it is causing her spirits to be pretty low. She won't talk to staff or even look at them when she is being spoken to. I guess she figures that she isn't here to make friends and she is upset at those who cause her pain- even if they are trying to help her.
I cried today. This is just all a bit much. I cannot believe I have a child who looks sick and who has to have a PICC and be on TPN. It is easy to remind myself that this is temporary, but it is a little hard to believe it when Liz has had such a difficult two years- getting worse rather than better.
Dr. Brilliant graced us with his presence today (sarcasm should be noted). We just don't relate to each other well, but I think we may be coming to a point where he understands I won't back down and I understand he does care about my girl and his brilliance gets in the way of any bedside manner. In any case, we are starting to speak the same language. So, Dr. Brilliant spent a few hours with the Oncology Pathologist and they went over samples and slides from all of her bone marrow aspirations. There is much to be said about what they talked about, but I will save that for another day. I am happy and relieved to know that so much time is being spent on Liz's case, and I was validated in my frustration when Dr. Brilliant said "we need to figure this out; it is just not right". Tonight Liz had blood taken for yet another set of genetic tests that Brilliant wants to run. We'll see.....

My goodness, how we wish this would be over. So many things we are praying for- too many to list right now. For tonight though, I just wish for it to be over.
So grateful for all of your prayer. For family and friends. For my husband and the health of my family. For beautiful, wonderful Kate and Jackson. For medical care (however screwed up the system may be). For caring, kind nurses.
And for the bravery, strength, inspiration and life of my Elizabeth.