Updates on Havalah

By: Kristen Date/Time: 7/30/2005 11:28:53 PM Update: Hello! I apologize for being so slack on adding updates. I can't even claim it's because nothing has been happening. Every friday the transplant surgeons from Froedert sit down with our GI doctor and transplant coordinator and talk about where all of the pre and post transplant kids are at. About 4-6 weeks ago they talked about Havalah and decided that she has gotten bigger and is doing well, but that a little more weight isn't going to be of signifigance to them during surgery so it's time to put her back to active on the list. So as of about 3 weeks ago she became active again. Her labs were all about the same, bili still just above 10, and ALT and AST a little higher than they have been but they tend to fluctuate. Her Pt score WAS a little higher though it went from 13 which is almost normal to 17 which is elevated. PT has a strong influence on your PELD number so Havalah's is currently at 17. If her labs get worse they will rescore her, but they don't have to rescore her until October so her PELD will be at least 17 until then. 17 is fairly moderate, originally they told me to be anticipcating a call with anything over 15, now I am hearing the average PELD at our center is around 23. Right now Havalah is at the top of the list at our center for her size and weight. That means if a type 0+ pediatric liver became available now, it would go to Havalah. Right now Havalah is stable enough that they won't take anything but an ideal liver from a pediatric donor. I am told that it is more than likely that Havalah's donor will be local to the area/Wisconsin, although they won't tell us any information about the donor at the time. It is fairly likely the child may even be a patient at Children's hospital, and the family could still be there with the child when we arrive at the hospital with Havalah. The same nurses that take care of Havalah may have also taken care of her future donor. It's hard to think about. That's why I never pray for us to get the call "soon" insteadI pray that the right liver will come fro Havalah at the right time, and I pray that anyone faced with the decision to donate their loved ones organs will say yes. If you haven't thought about it previously it can be a hard thing to say yes to at your time of grief. In order to be a candidate for organ donation, you need to be brain dead, and your other organs need to be unharmed. this can often mean some sort of trauma to the head, or a car accident etc. So.... the death of someone eligible to donate is going to come as a surprise, and most likely family members will still be in denial. I can't think of anything harder than losing your child. So on a happier note .... we've had a busy summer so far. Today we went to a wonderful event put on by children's hospital for children with feeding tubes and thier families. Most of the kids there had long term issues that required feeding tubes, and a lot of them had G-tubes which is when the opening is surgically implanted into your stomache. We got free zoo passes, and free parking, a wonderful lunch, and each kid got to pick out a donated toy. Havalah picked a baby cinderella doll that she swung around by it's hair all day. They also had face painting, hair braiding , arts and crafts and all sorts of other fun things for the kids. While I really enjoyed it, I hope that we won't be eligible to go next year. While I am dreading having Havalah go through transplant surgery and recovery, and i have a strong fear of complications/the unknown. I do look forward to getting rid of that NG tube taped to her face, and to getting rid of her jaundice! I can't wait to see her looking like any normal healthy kid. I was going to type up all of the ohter stuff e have done this summer, but this post is getting long allready, so i think I'll save it for next time. Hopefully we will get some new pictures up soon as well!

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