Tomorrow is surgery day. Campbell is scheduled as a first case which means check in time is 5:30 am. Admitting and pre-op procedures usually take a couple of hours so by mid-afternoon, we should be able to see our girl and her new head.
While Campbell will undergo several surgeries in the coming months, this is the main cranial surgery until she’s around age eight. Tomorrow’s surgery is a calvarial vault remodel (CVR). Several people have asked about the specifics of this surgery, so here is the broad view of what she’s facing tomorrow.
There are typically three teams of doctors involved in this surgery: plastic surgeons, neurosurgeons, and anesthesiologists. During the CVR, the neurosurgeons go in through the same headband-like incision from her distractor surgery and open up her cranium. They remove the part of the skull to be remodeled and hand it to the plastic surgeons who have (in basic terms) a carpentry set in the OR. While the plastic surgeons carve and reshape what they want her skull and forehead to look like, the neurosurgeons keep her derma and brain hydrated. The neurosurgeons then manipulate her brain into shape they want, the pieces of the skull go back on, and the plastic docs build out an eyebrow bone. The anesthesiologist have the happy task of making sure she keeps breathing and feels no pain.
Campbell will go first to the PICU and then to the floor. Blood loss and swelling are common with the CVR, and swelling usually peaks around 72 hours. With no complications, Campbell will spend four to five days in the hospital.
During the CVR, the doctors will give Campbell a head that is closer in size to that of an elementary kid. As she ages, she’ll grow into her head size. By the time she’s seven or eight, she’ll be ready for the next stage and surgery which includes a mid-face advancement.
A couple of weeks ago, I went to visit the Thomas family. Riley has Apert and her mom Summer shared Riley’s CVR photos with me. I am glad she did to help prepare me for what’s coming in the days ahead.
On Monday, Campbell saw her pulmonary doctor to go over her sleep study. While she seemed to do well, the results were inconclusive due to a fire alarm during the study. Campbell didn’t sleep as long as needed so she’ll repeat the study after her first birthday.
See, Daddy, I’m breathing just fine.
As we head into tomorrow, we are keenly aware that we are not traveling this road alone. Friends, family, and sometimes strangers have come along side us, offering care and support. Our friend Jeff gave blood that will be used tomorrow – an amazing gift! We’ve received notes and prayers, and while we haven’t been able to respond to each one, we are still very much grateful. We also have been blessed with wonderful caregivers and therapists who love on Campbell week-to-week.
Amanda loving on our girl
Campbell and Shelli
Our friend Bryan nominated Campbell as a Tiny Superhero. Tiny Superheroes was started by a woman who has a heart for kids facing medical challenges and disabilities. Recently, ABC News featured the organization during its nightly broadcast. Thanks to Robyn, the founder, and Bryan, Campbell’s cape arrived in the mail.
Campbell has always been our superhero. Now she has the cape to wear!
We will be updating Campbell’s Facebook page with her progress. You can find it here.
Joel and I kindly ask for your prayers. For our superhero as she fights, for the doctors, nurses and staff as they tend to her, and for Joel and me as we wait. May God touch our girl with tender mercies and healing.
Campbell Taylor's Journey 