United Brachial Plexus Network, Inc.

Where do I begin,well my son(Butchie) was scheduled for secondary surgery on the 25th of april, we went for pre-op testing last week and had an appt. with our pediatrician for surgical clearance yestuarday and Butchie is physically fine for surgery except for the fact that (heres the brick to the head) he's got a blood disorder VON WILLEBRAND his blood doesn't clot like it should,needless to say he cannot have surgery til this gets taken care of, which I live in PA and they say the closest hemotologist is about an hr away (geisinger hosp.) but they cannot get him in for 2-3 months,does anybody know of a hemotologist in philly or Ny that I can try and get him in quicker??.So I guess my question is first WHY US? but is anybody familiar with this disease??, I've learned everything pretty much from the internet last nite and there is something they can give him b4 surgery to start the blood clotting that would get him through the surgery, but he had primary and this never came out, were we just not told? did somebody miss it the first time? I know you guys don't have the answers for me, but I just had to vent it alittle,screaming isn't working lol thanks for being out there and any help is so appreciated

Hi Staycee - call down to CHOP - I'm sure they have a whole crew to help with this. I'm sorry to hear about this complication but so glad to know that he had pre-op testing done and that they found this.

Good luck,
francine

ps - you know there's something I just thought of...how about calling a blood lab like QUEST or some other big lab near you to see if they can recommend a pediatric hematologist?...they probably have them employed there.

Sometimes when things happen like this they are for a reason, maybe your son doesnt need the surgery right now -It sounds like it would definately present a risk.
who knows,
It is not emergency surgery anyways.

I know it must be so hard right now, love your bebe, and hang in there,
thats my only suggestion, Im sorry that youre having a hard \time.

Hi Staycee,

Try where we go. We go to Robert Wood Johnson in New Brunswick NJ. That is in Central New Jersey. They have an owesome Hemotology/Oncology unit. Tops in the State. I don't know where in PA you are but if you would like the name of the # one guy to see e-mail me and I will give you the phone number to the clinic and the Dr's name to ask for. Good luck!

Patty

Stacyee,
Where are you in PA? In our experience Children's Hospital of Philadelphia had been great with both our kids. It's about 2 hours from where we are now but well worth it. (we're in the Poconos)
Cindy