United Brachial Plexus Network, Inc.

Hi all,I am so frustrated!!! We have a Division of Specialized Care for Children here in Illinois and they pay for blake's BPI care and are paying for our trip to TCH and hotel stay, we are grateful to have this support. But, it is only 2 weeks away and I still do not have airline tickets or hotel reservations since they do all of this and this morning the contact there called and asked how many trips to TCH has this been and how many have they paid for? I paid for the 1st one, they paid for #2 and now we think they are paying for #3. I asked if there was a problem and she said no, they are just trying to establish a standard of care. O.K., they have known about this surgery since October, and everything has been no problem...now 2 weeks away and they have me freaking out that they aren't going to help us...I can't throw this whole thing together in 2 weeks without their financial support!!! She said for me not to worry about anything, but how can I not? I'm worried enough about having my little boy go through this all again and now this!! I can't wait for us to go and for Blake to be on the road to recovery.

Oh, she also asked if there was an Illinois doctor that performed the capsulodesis and I told her no,duh, I went to St. Louis and they told me that he was fine and they couldn't see any dislocation and for me to be happy with what he has and Indiana Hand Center wouldn't accept our insurance. They knew all of this and knew that I have been on a wild goose chase for the past year trying to find out another opinion closer to home!!!UGGHHH!!!

And to top it all off, Blake and his little sister both have awful colds!!Pray for them to get well soon!!
Sorry so long, I just needed a little venting!!

Crystal S.

these are the key words when you have to fight to stay at TCH - your child has the right to have "continuity of care" with his brachial plexus specialist.

Who is that person's boss? I'd have a talk with them ASAP! They can't be playing around at this late date.

Stay strong and FIGHT like the dickens!
We're all behind you!!

-francine

Where in Illinois are you at? I live in Zion. I know the frustrations that you are having. When will you be in Texas. I will be there with my little boy on the 28th. Please E-mail. Gayle

I hope things all work out for you. I know that all these details can be very frustrating and stressful. If you haven't already done so, I would suggest corresponding by mail with them to make sure that things move more smoothly (hopefully) even in the future. I know it gets time consuming sending lots of letters, but I personally believe it's worth it in the end. Don't worry, your children have plenty of time to recover. If it starts getting too close, then you could always see the Ped. and get some antibiotics. Nicole got sick a few days before her surgery and I got antibiotics right away, something I wouldn't have normally done so quickly. Thankfully, the cold cleared up enough for surgery. Take care. -Tina