Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. "Mom, my arm hurts" - At the end of October, after a day or so of swelling, discoloration, and pain in her right arm, Julia was diagnosed with severe blood clots. We thought there were three clots at first, but it turned out to be one long clot that ran through three different areas of her arm (from mid-bicep up and under her collarbone). A very surprising and scary discovery! That began a months-long process of treating the clots, finding out what caused the clots, and figuring out how to make sure the clots don't happen again. We have spent many hours/days in urgent care, hospitals, doctors' offices and labs. She has had so many vials of blood taken and more ultrasounds and other diagnostic tests (xray, ecchocardiogram, MRI/V, etc) than we would have thought humanly possible. Through it all Jules has been a trooper! Thoracic Outlet Syndrome + Medical disclaimer - my brothers inherited all the medical genes in the family; I inherited the banker genes so the forthcoming explanation is all subject to my non-medical filter. :-) It was discovered that Julia inherited a clotting disorder from me called Factor Five Leiden (that makes her more susceptible to clots). However, the actual cause of the blood clot is a condition known as Thoracic Outlet Syndrome (TOS). With TOS, when a person's arm is extended overhead, the topmost rib pinches down on either the vein, artery, or nerve that runs from your torso to your arm. In Julia's case, the rib pinches off the vein. This type of TOS is called "Pagett-Schroetter". Julia has been on blood thinners since the discovery of the clot. Our repeated requests for her to wear bubble wrap when she leaves the house met with enthusiastic rejection. However, she has been doing a fine job of keeping herself out of harm's way. The blood thinners did their job admirably, allowing her body to finally dissolve the clot as of the end of the year. Unfortunately, given the Factor V and her anatomical design (ie, the rib) our choices came down to having her stay on blood thinners for the rest of her life, or, have surgery to remove the offending rib. Hospital to Hospital - Though we started out care at DuPont Hospital, we have since transferred to the Thrombosis Center at Children's Hospital of Philadelphia (CHOP) where we were led to Dr. Fairman of the Hospital of the University of Pennsylvania (HUP/UPenn). Dr. Fairman is one of only four doctors on the East Coast (and one of very few in the country) who specializes in rib resection - an interest he developed over 30 years ago. He has successfully performed this surgery on professional, collegiate and Olympic athletes; adults and children alike. We feel very blessed to have found Marilyn at CHOP and Dr. Fairman at Penn. Surgery and Prognosis - Surgery will be on Wednesday, February 10th at Penn. Dr. Fairman said that Julia will be in the hospital 4 to 5 days; he wants to be sure she is comfortable before she is discharged. She will then be home from school for another two weeks as she rests and gets her strength back. There will be about two months of no sports or repetitive motion (disappointingly for Jules, homework and tests are NOT considered repetitive motions...). After that, Dr. Fairman expects she will be able to resume all activities without risk of this happening again. THANK YOU ALL! Thank you all for your love and support and prayers through the past few difficult months and especially now, as we hopefully hit the turning point and can move forward again. We are planning to post updates about Julia's progress from her surgery and recovery that follows. Odd timing/coincidence - Two days after we got our arms around Julia's diagnosis and recommended treatment,this story aired on Good Morning America. It features a story about Tamar Braxton, a contestant on last Fall's Dancing With The Stars. Tamar had to drop out of the competition because of what was initially thought to be pneumonia. Turns out she had a pulmonary embolism from a blood clot in her arm that happened because of TOS (thank goodness we caught and started treating Julia's clot without having any embolisms occur!) At the 1:45 mark in the video,Robin Roberts interviews a medical expert from ABC who provides a very nice overview of Thoracic Outlet Syndrome and the surgical procedure to address it.
http://abcnews.go.com/Entertainment/tamar-braxton-reveals-rib-removal-dwts-scare/story?id=35820114 On behalf of Julia, thank you in advance for your support for her during this time. We'll be sure to post updates and share her progress through it all!With love and appreciation from us all!!! Esther & Brian & Julia & Matt & Libby
