It’s truly miraculous to me. Two weeks ago, the surgeon made an almost five inch incision down her back. Through all the layers, de-bulking a lipoma (benign fatty tumor) and de-tethering her spinal cord so it could move freely in the spinal column. Shifting her lower spine back into place, and putting the spine back together. This delicate work required meticulous concentration so as not to create further nerve damage. A neurophysiologist monitored nerves throughout her body with tiny needles placed in her feet, skull and other places. Ultimately, the lipoma could not be fully removed. They got as much as they could with the precision of a laser. Over four hours later, they closed her up with meticulous internal stitches and sealed it shut with Derma Bond, and brought her back to us.
Infection, spinal fluid leak, nerve damage…the potential complications and risks were truly scary. How would we keep her laying flat for 48 hours post-op? Would she be in awful pain? How would we know – she has such little language and communicating about pain is really hard. What if we went all the way home and THEN she got an infection? What if the concern they had about possible new nerve damage in her left foot meant we’d now have two feet requiring treatment? What if her bowel/bladder issues got worse after this?
Two weeks later and I am in in total and complete AWE of the healing God has allowed for Emily. Her incision site is stunning to me. I don’t think they could have done it any better if they’d had the best plastic surgeon in that OR. Not only has it healed without any complications, but it’s healing in a way should leave a very minimal scar. To look at it, you would think the surgery was several weeks ago. We are so incredibly grateful. The surgeon, and all the doctors did an amazing job. She’s done so well, we didn’t have to go back down for the scheduled follow up appointment this week!
The other procedures yielded good news overall. She’ll need some additional urological procedures in the future, but some of the “worst case” scenarios were ruled out!
She will have a follow up MRI and Urodynamics in late January/early February. She begins weekly serial casting of her club foot January 3rd which should continue for about 6 weeks. We had hoped to start this right away, but after her surgery was delayed two weeks, we orthopedist doesn’t have availability until January. In the meantime, she has a PT evaluation in early December and we’ll have to repeat some blood work to rule out a couple of things that flagged in the first round. Nothing we’re significantly concerned about, but need to rule out.
It is a relief to have this surgery behind us. To have the unknowns answered and to see her almost totally back to herself is truly unexpected. I was honestly prepared for a lot longer recovery and to have at least of the common complications. I look at her back, I watch her move, and I still can’t believe it. She’s incredibly strong, we are incredibly blessed, and God is so gracious.