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.