Around the World in 6 Hours …

That’s what Jennah’s orthopedic surgeon calls it, “the ‘Around-the-World’ procedure”. I guess the “world” is the femur head. Jennah was officially cleared for surgery last Tuesday after spending most of the day at Seattle Children’s. Using my C.A.P. (Clinic Access Pass for unfortunately frequent patients), we were checked in for a day for clinic visits. We started out getting measured for her spica cast, which will go from her waist to her ankles. Crap! I just remembered that I forgot to request a color‼ I really don’t want hot pink … chime in your opinions now! I’m thinking purple? Aqua blue would be nice. OK, sorry … totally diversion there. I’m in a bad mood from studying, reviewing the hospital check lists and preparations, and my thoughts are everywhere, but I’ll try to limit the rantings …

So where was I? Yes, she’ll be in a spica cast for 6 weeks and then put into a brace, for which I did manage to request purple cushions! The brace will be removable for baths and we’ll wean her off within another 6 weeks, inshallah.

Then we went in for xray. We’ve had so many xrays that we should be issued a radiation monitor button. The usual …

XRay tech: “Mom, any chance you can be pregnant?”

Me: “Good lord, I hope not!”

Same conversation every time. I don the lead apron, which sadly I recognize are new since our last visit a few months ago. I take off Jennah’s diaper and she proceeds to urinate, as usual, on the table despite my pleas for her to pee beforehand. The girl just does not listen to her mom’s instructions! :)

Our next visit is with the surgical team … our surgeon, a resident, a physician’s assistant, and his nurse (who won’t be in the surgery, but she’s awesome). While waiting, Jennah took the opportunity for a nap in my lap and I finished my homework due later that evening. The “Around-the-World” procedure consists of the following:

• Bilateral acetabuloplasty – reshaping of the hip socket (acetabulum); nails may be inserted to help shape and then removed after a year or two
• Bilateral osteotomy  – reshaping the femur heads
• Bilateral tenotomy – cutting of abductor and adductor muscles to manually loosen the tone and, hopefully, prevent dislocation again in the future.

Procedure, including anesthesia, will last upwards of 6 hours. Anticipate at least 4 days in the hospital post-op. Expect a lot of discomfort and pain. She’ll have an epidural put in. Expect recovery to last throughout the summer. Good times. Pray a lot.

Then it was time for our P.A.S.S. (Pre-Anesthesia Surgical Services) appointment. The most non-invasive appointment of our day and Jennah loses it. She screamed bloody murder through the whole meeting and all the way through the halls as I tried to calmly carry her (32 lbs of screaming, wobbling Jennah) to the outside. You can see the poor kids in the surgical waiting area thinking, “What in the hell did they just do to her behind those closed doors???‼!”

After calming her down and forcing some lunch into her g-tube, we went back in for her blood draws. She jumped a bit at the prick of the needle, but simply sighed and smiled. Thanks, Jennah …

Finally done at Seattle Children’s, we cruise back to the eastside to get her cleared by her pediatrician, who happens to be at the farthest practice we could find! Another long wait and Jennah takes a nap on the table … poor thing. After some more poking and prodding, she is finally cleared for surgery on Monday, April 25, Inshallah!

OK, I'm in a slightly better mood now ...

It's never easy

My thoughts are occupied with Jennah's upcoming hip reconstruction. The pre-op appointment is coming up on 4/12 (inshallah) where we will discuss details of the procedure and the dreadful recovery period. Our hospital stay is scheduled for a minimum of 4 days (ISA), just for pain management. I also know that she'll be in a spica cast, from her waist down to her knees, for 6 weeks. There will be bone shaving and muscle cutting involved. I keep visualizing the pelvic area of my cadaver back in anatomy lab ... we had to use power saws to cut through bone. It was loud and generated an amazing amount of heat. The muscles, specifically the psoas, looked like the shredded meat you get in a good quality burrito. Surprising easy to slice with a simple flick of a sharp scalpel. Jennah's hips were improving back then and we thought surgery was off the table.

It's never easy and never gets easier to have a child with profound disabilities. As she grows, we overcome some issues and gain others. Her seizures are well controlled now and she is more aware. More awareness equate to more emotions, desires, and temperament. It's easy to tell when she's happy and comfortable. It's torture when she's crying and can't communicate what she needs or what hurts.

Some may wonder why we are pursuing the reconstruction. She will not walk, she will not even stand. Maybe she'll sit some day, inshallah, and this could only help. It will also definitely aid in proper hygiene. Simple hip abduction is taken for granted until you try to change Jennah's diaper. Many of you know how obsessive I am about hygiene in that area, so this is just borderline selfish for me! But seriously, imagine in the puberty years (ISA), how important it will be to keep the area clean. Finally, pain management. The odds were about 50/50 that she will suffer from juvenile arthritis. But with her new found awareness, those odds are more likely that she will indeed suffer the pain of juvenile arthritis and pursuing reconstruction at an older age can be more painful and risky with more blood loss.

I guess I'm sharing all this (too much, perhaps?) info to convince myself, again, that we are making the right decision. I've prayed for months ... maybe over a year now ... for guidance on a decision. Her therapists and doctors (orthopedic surgeon, neurodevelopmental, pediatrician, neurologist) all agree that now is the right time to do it. So why do I still hesitate? Because I look at this every day:

When will I see her play and smile like this again after the procedure? This is what I dread most. Will she smile while she’s in the cast? Will she laugh and dance around when we turn on Lady Gaga’s Pokerface (her favorite song … blame the uncles)? This is what pains me … but that’s probably nothing compared to the pain she will have to endure. A pain she didn’t ask for, but we are knowingly inflicting upon her. It just doesn’t seem right.