I always say there is never a dull moment for this Sullivan Family, and, 2018 is shaping up to be no different than any other time.
As we knew, Daisy has bilateral hip dislocations. After learning this from her team at St Christopher's Hospital for Children, we decided to get a second opinion and align ourselves with the best care available. We were able to connect with the best pediatric orthopedic surgeon who specializes in this issue via a concierge service at Children's Hospital of Philadelphia (all thanks to a friend I made in their fundraising department - Hi Molly! - because of this very blog). Dr. Wudbhav Sankar and his team have have recommended open reduction hip surgery, pelvic osteomy, adductor tenotomy and possible femoral shortening osteomy to help fix Daisy's issues.
There is the option not to operate now but the potential consequences include: waddling instead of walking normally, not being able to participate in sports, not being able to run, swim, hike or be active for any prolonged period. Daisy could experience pain as early as her teens with a need for surgery in her early twenties. As much as we don't want her to have to go through surgery, we also don't want her to have to go through life with severe physical limitations. She has already proven to be an extremely active child - we don't want to take anything away from her.
Someone learned to put on her coat at school!
Surgical & Other Procedures
The surgeon will only operate on one hip at a time due to potential blood loss and complexity. They will make an incision above the hip, go in and "connect the ball and the socket", close the area and then fit her in a special Hip Spica cast. The surgeries have been spaced 3 weeks apart (April 23 and May 14) and Daisy will be in the hospital for about 2 days while she heals after each procedure so she can get over the worst of the pain, adjust to medicine etc. In total she will be in casts for about 9 weeks (6 weeks following the last surgery) and during that time she will not be able to walk - at best she can army crawl and/or drag herself around. There will be several MRI's required over the weeks and months that follow to assess progress.
We are working quickly to hire a full-time nanny to begin in May, and, in the interim, our beloved families have offered to step in and help with round-the-clock care so Daisy can rest comfortably at home and recover while Nick and I work. We are currently building a huge list of activities for stationary/immobile toddlers to keep her busy and away from TV as much as possible. (BIG thanks to Jess Dooley, Jess Blake & my Aunt Kathy for helping me brainstorm activities!) When her casts eventually come off, we've been told she may not want to or be able to walk for a while while the stiffness in her legs goes away and she slowly remembers how to walk again. We are prepared for a long, quiet summer at home.
Infection, blood loss, potential injury to nerves or blood vessels, re-dislocation of the hip, need for additional surgery, need for deepening of the hip socket, blood transfusion issues etc.
We plan to enjoy the month of March and all of the travel we already have booked (Iceland and New Orleans) and focus most of April on celebrating Daisy's second birthday and spoiling her with all her favorite activities. Then, at the end of April, we'll hunker down for the months that follow which will be focused on intervention, recovery, healing, resting and welcoming baby #2. We've made a book for Daisy with photographs of the hospital, hospital rooms, her doctor and nurse, the cast and the MRI machine so we can start talking about what is ahead and she can get comfortable with these new concepts.
This is scary stuff and we are nervous but trying to stay focused on the positives. Daisy could have (and was supposed to have!) many worse problems and we are extremely lucky to live about 10 miles from the best hospital in the world for children with Daisy's issues. The CHOP team knows Daisy and her history and we have friends and connections there who will help us navigate this journey. Sometimes I think God brought us to Philadelphia for this reason.
We welcome any and all visitors, pen pals and ideas you readers may have for activities, books or movies to keep Daisy happy and engaged. I plan to write about the procedure and everything it entails along the way and will share all we've learned on this blog so it can help other families. We are SO lucky to have friends and family who have reached out from near and far with stories of their own experiences, creative ideas and offers to help. I know I say this often - especially here on this blog - but we really do know the very best people. Thank you for following our journey & for your prayers and warm thoughts as always. Daisy sends her love and thanks to each of you ❤