Surgery & Recovery, Day 1

I will do my best to inform everyone of what's going on in a factual way, without flooding it with emotions. It's been a rough day for all of us, but things are on the up and up.

This morning, bright and early, Dustin Jr. was brought into Phoenix Children's Hospital for his surgery. For those of you who are unfamiliar with his situation, he has a sacral dimple on his lower back-basically, a hole above his butt. It raised eyebrows from the day he was born, but never really seemed to cause any issues. In March, we brought him in for an MRI and the test results revealed his spinal cord is tethered. The spinal cord normally hangs loose in the canal, free to move up and down with growth, bending and stretching- a tethered cord is held taut at the end. In children, a tethered cord can cause the spinal cord to stretch as they grow, usually leading to progressive spinal cord damage if left untreated. It can produce a fluid cyst in the spinal cord, which eventually leads to loss of movement or feeling, or the onset of severe pain.

The surgery went well, the doctor came out to let us know things went just as planned. Naturally, I've been a nervous wreck for days prior to today, and even more so now. He assured me numerous times that things were just fine, and everything went smoothly. When the spinal cord is tethered, it may stretch and cause pain, but with an infant, there's really no way to tell. The doctor explained that as he snipped Dustin's cord, it shrivelled up quickly, indicating it was, indeed, tighter than expected.

Finally, after two and a half hours of waiting, we were allowed back to his room to see him. He has been placed in the pediatric intensive care unit (PICU) to monitor his position and the incision sight. So far, there has been no leakage of spinal cord fluid or blood on his bandage. After the surgery was performed, the doctor used dissolving stitches and a "glue" to seal the cut, so the bandage will stay on as long as possible to help it heal quickly.

We have a general idea of his "schedule" over the next few days, and have high hopes of being allowed to go home as early as Friday morning. Right after the surgery Dustin has to remain flat on his stomach or side for 24 hours to prevent any pressure on the incision site or his spinal cord. My poor son literally cried near constant from 11am until close to 6pm. He's pretty comfortable with the dosage of morphine he's been receiving, he's now sleeping soundly. There is an iv in each hand, and also one in his food, along with a catheter to reduce the number of diaper changes during his stay. He has yet to be coherent enough to eat anything, but tomorrow he will be able to lay flat on his back and will hopefully snack on some pedialite. He will spend 24 hours flat on his back, and we will gradually raise him by 30 degree increments until he's able to sit up without complications. From the sounds of things, he will be limited in the amount of activity he can participate in for a few weeks, but trying to limit such an active boy like him is going to be difficult!

I would like to thank everyone again for all the sweet encouraging words, the prayers and thoughts for us and our family. Without all of you, I wouldn't have made it as far as I have today. I am taking it one day at a time, and doing my best to be here for my son. I knew he was going to be trouble, but I had no idea this is what I was in for! I am so thankful to have him in my life, and to have caught this issue before he was in any pain. Now that he is resting, I am going to try to relax. He sure is handsome when he's sleeping! Goodnight everyone, I promise to keep you updated as I know more.