We tried so hard to keep Lizzy out of extra surgeries but had to come to a unanimous decision on her and her health. We did all the research we could and read the book we got from the Orthopedic surgeon cover to cover. We found videos that showed what the surgery would be like and talked with her Physical Therapist to see if she knew of any other child who underwent this surgery. We did our homework on this. And it finally came down to rods would equal longer fuller life, without rods life would become shorter and organs would become dislodged from their rightful places.
The day came when we had to set the date and put the back brace down for good since it was just buying us time. I prayed I would not go into labor since I was due within a few weeks of this surgery with my second child.
The scans had been reviewed (MRI and X-ray), and the MRI was done for Neurosurgery to check the syrinx (little blob-looking things in the spinal cord) in Lizzy's spinal cord. They had been keeping an eye on one of them in the top part of her spinal cord which was dealing with increased pressure.
We got a room at a local hotel and geared up for the next few days. We knew that recovery would be about 5 days in hospital stays and about 3 weeks recovery at home. Lizzy's PT told us to take before and after pics and they would show us the dramatic difference that this surgery was going to do for her. So that night we did just that.
We said, "We'll see you when you wake up after surgery", little did we know that those words wouldn't happen till a week later. After Lizzy's surgery, she was taken up to the PICU and was still on a ventilator. The doctors came by to check on her and to talk with us. Surgery had gone as expected and she did great throughout it. They placed the VEPTR rods first and then Neurosurgery went in and placed a shunt in her spinal cord to help drain the extra fluid around her syrinx.
The reasons for her having to stay so long in the PICU and on the ventilator were tied to the shunt. The drain for her spinal shunt was placed in her chest cavity; so, every time she took a breath it would cause a suction to happen, and pull the extra fluid in. Which would then recirculate throughout the body. (This is what the spinal cord does naturally) The problem that happened was there was a LOT of fluid around the syrinx, more than the doctors could see in scans. This extra fluid was causing one of Lizzy's lungs to collapse, they had to do a tap twice before things started to look up.
Once Lizzy was able to come off the ventilator she was moved to a step-down unit. During this time my husband and I were back and forth between the hospital and the Ronald McDonald House since you can't sleep in the PICU area. Once Lizzy was moved to the step-down unit I stayed in the room with her, and Dad came back and forth to the hospital and RMH.
The day her release paperwork came by the nurses' station was the happiest day for all of us. We loaded up in the car and made sure Lizzy had padding for her car seat and that she was given one last dose of pain medicine before we started our 3-hour drive home. Once home we got her settled in her room and home recovery started.
Fast forward 3 years and she has undergone 6-7 surgeries related to the VEPTR rods alone. She is on her second set of rods now and has to go back in for lengthening every 6-8 months, depending on how fast she grows. We go back every 3 months for X-rays to check how her spine is looking. She started with a 60+ degree curve and within a matter of hours became straight with a 2-inch growth spurt. The lengthening will continue till she reaches spinal maturity which is around 14 years old for girls.
Fast forward to the present. Lizzy has undergone 20+ surgeries and had her last rod surgery in 2019.