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!

Happy Easter and Updates

Happy Easter from Campbell!!  She is doing great and looked so cute in her Easter outfit today. Kyle saw her in her pink tutu skirt and said, “Campbell looks like a princess”.  She sure did (thank you, Brandy!)  Because of her recent bout with RSV, we’ve kept her close to home, which means no church nursery or outings to places like the germ pits, I mean the ball pits, of Chuck E Cheese.  She’s so close to surgery and at this point, we don’t want anything to risk compromising her immune system.

Tomorrow, Joel and I head to Children’s LA (CHLA) for Campbell’s pre-op appointments and to bank blood for her surgery.  Currently, she is scheduled for posterior cranial surgery as well as a procedure to check out her throat and airway on Wednesday, April 10th.  After tomorrow’s appointment, we should know more of the details of her surgery, expected outcomes, recovery time, after care, etc.

With all the craziness of Campbell’s RSV visit to CHOC, I forgot to post that Campbell has qualified for services through the Regional Center (RCOC).  She now sees a multi-disciplinary therapist from Blind Children’s Learning Center (BCLC) for weekly in-home visits.  Ms. D. is encouraging our family in many ways as we learn how to help Campbell connect with her world.  BCLC is a great organization with many resources, including therapists who can work with the other children in the family.  Starting in two weeks, while Campbell receives visual therapy, Kyle and Colton will receive play therapy to help them adjust.  Kyle seems to be feeling the strain of a special needs sibling more than the other two boys as of late.

In addition to BCLC, a therapist from the Braille Institute, Ms. J, now visits Campbell on a regular basis.  We are still working on getting her physical and occupational therapy.

Last week, Joel took Campbell for an overnight sleep study at CHLA to look at her oxygen levels and assess any sleep apnea.  While we are waiting for the official report, Joel said her oxygen level fell while she was sleeping and that her baseline level was lower than expected.  Depending on the report, the doctors may decide to put her on oxygen at night.

Last Sunday, we attended an Apert International fundraiser at a local racetrack, Santa Anita Park.  Several friends went with us, and we had a beautiful afternoon watching the ponies and meeting some of the other So Cal Apert and Pfeiffer families.  We saw a few kids who see the same craniofacial team at CHLA and caught up with their parents.  I am amazed at the power of social media in today’s world which connects us with similar families who can offer advice and encouragement. Thank you, Mark Zuckerberg.

Speaking of thank yous, thank you dear friends for supporting and encouraging our family.  From the teachers and families from the boys’ school to friends old and new, near and far – thank you!  I am humbled by your thoughtfulness and generosity, and your prayers mean so much, especially as we head into this next surgery.

I’ll post more about Campbell’s surgery as we find out the details.