Pre-Surgery Week and Smiles

On Monday, we met with Dr. Toranto, Dr. Urata’s fellow, who walked us through Campbell’s surgery for a posterior cranial vault with distraction osteogenesis.

From what we understand, the surgical team will make a headband-like zig-zag cut and place metal distractors, or spacers, along the scar.  As the scar begins to heal, they/we will turn the distractors (which sound like glorified hex screws), which will in turn lengthen out the scar and allow the bone to fill the space.  After the distractors create enough space, the lengthening process stops and the distractors remain in place for three months while the bone finishes filling in and hardens.

This surgery will focus primarily on growing bone in on the posterior (back) of the cranium while giving her brain room to grow.   The cranial vault surgery later this summer/early fall will address the front part of her skull and the overall head shape.

Here are a couple of articles describing the posterior cranial vault with distraction surgery (one with photos showing the stages of distraction and one with photos of the surgery.  Please note: some of the photos are a little graphic). As with all craniofacial surgeries, each patient and situation is unique so Campbell’s surgery and results may be different.

Dr. Toranto discussed the risks and desired outcomes with us, and while turning our daughter over to the surgical team is difficult, this surgery gives Campbell’s brain the space it needs to grow.

Also on Monday, we saw the craniofacial psychologist, geneticist, research aid, and Joel and I banked blood for Campbell’s surgery.

On Tuesday, we went back to CHLA and met with two doctors from Pulmonology.  Campbell’s sleep study results came back, and she did less than stellar. The study showed that Campbell has a lower oxygen baseline and her pulse ox rate dips significantly when she’s sleeping.  This could be due to the anatomy of her nose, her recent RSV, or some other combination of factors.  In any case, Campbell needs oxygen, especially at night, so she’s been outfitted with oxygen tanks and a nebulizer.  She’ll repeat the study in a couple of months to see if the surgery affects her oxygen levels, and hopefully, she won’t have to be on oxygen long-term.

On Wednesday, Campbell had an occupational therapy evaluation at CHOC.  The therapist said Campbell should be in OT, and she’s been place on a wait list for an opening in scheduling.  Currently, the wait is one to two months to begin OT services.

On Thursday, Campbell saw her vision therapist from the Braille Institute.  Every day Campbell seems a little more alert and her vision “window” is lengthening.

Campbell is scheduled for an MRI early next Tuesday morning and she will most likely be the first surgery on Wednesday.  She’s a difficult intubation and is small, so unless a younger baby needs surgery on that day, she’ll be the first case.

The biggest thing that happened this week was that Campbell broke into a full-on smile.  We were tickling her and the boys were singing to her about how pretty she is when she sneaked it in.  The whole family erupted in cheers.  We are looking forward to seeing more of that smile in the days to come!