Our Visit with the Pediatric Surgeon

So we were hoping to meet with the surgeon and schedule a date to have all 3 procedures done - the G-tube, Nissen, and Botox injections. (See previous post.) The surgeon, however, is concerned about doing all 3 at once since that would mean Ollie would be under anesthesia for almost 2 hours: 30 minutes for the G-tube, 45 for the Nissen and another 30 for the Botox. The fear with SMA is that if you intubate (which is necessary while under anesthesia) you may not be able to extubate.

We're now trying to consult with an otolaryngologist about the Botox and whether it can be done without the anesthesia. Or whether the Nissen is a must-have with the G-tube. Basically, we're trying to pick 2 of the 3 procedures which means finding another way to do the 3rd choice or not doing the 3rd choice at all. More research and more questions for doctors and other SMA families.

On the way home from the consult with the pediatric surgeon, Ollie was sounding rather raspy and was unhappy about being in the car seat. As I was driving, I would be looking at traffic and then looking at Ollie in the mirror. Back and forth, back and forth. About half way back to the house, I decided to pull off the highway because he just wasn't getting any happier and the more he cries, the more gunk there is to suction out of his mouth with the blue bulb syringe. I had hoped to just suction his mouth, calm him and get back to driving. But there was soooo much stuff in his mouth. I ended up letting my friend drive us home while I sat in the back seat suctioning most of the way to the house. (Thank you, Cathy, for remembering how to drive a stick shift.)

I felt bad for the little guy but it was also a bit scary. Was it caused by a cold? Is it his SMA causing the extra saliva and mucus? Will he be able to travel in his regular car seat much longer? What do we get for the car if he can't? So many questions....

We made it home and I hurried him into the house and fired up the good ol' CoughAssist. Honestly, though, once he was lying flat on the floor he began to sound better. We did a couple rounds of the CoughAssist and I turned him on his side to let any extra saliva run out of his mouth. And then he smiled. A great big smile. As if to say thanks, Mama.

So since he's got the extra congestion in his nose, we're going with the cold. We had noticed a day or two ago that there was a little bit of color to his mucus. (Sorry, folks, this isn't a clean disease either. The words mucus and secretions are part of the daily vocabulary.) I called his pediatrician at every number I could find for her. She called me back and we talked about over the counter meds and antibiotics and humidifiers and saline drops. And she called a prescription in for some amoxicillin. (BTW, have I mentioned that we love Dr. Goodmon before?)

Poor Oliver...he's gonna be seeing a lot more of his friends CoughAssist and bulb syringe for a while.