Tuesday, September 15, 2015

Sometimes Social Media is My Life Line

I’ll admit it. As a mom to a medically complex/special needs child, I use social media as a life line, and (ahem) I overshare. I’m not ashamed of it because many times, it has saved my son's life...well...at least my sanity.

For example, at the end of February 2015, we were on our way to Texas with our son Austin for a Selective Percutaneous Myofascial Lengthening (SPML, say that five times) surgery in Galveston. After an eight hour drive from Arizona along I-10 through perfectly nice weather, we ended up in Van Horn, TX for the night. However, upon waking we found we would be driving through one of Texas’ freak winter storms for most of the day when we thought we had only nine or so hours left to get to Galveston according to Google Maps.

I was sitting in the middle row middle seat of our mini van next to my son’s car seat so I could periodically suction his secretions. I had a clear view out the front windshield of a gray, snowy, sleety, and cold highway. I started to panic a little as I realized we had stopped carrying winter gear in our car after we moved to Arizona.

My husband wasn’t helping my state of mind. He kept pointing out stalled vehicles, overturned trucks, and commenting that he kept feeling the car lose traction. We were only going 45 miles an hour and could barely see a few car lengths ahead. I kept my eyes peeled for tail lights in front of us. I also looked up the weather map on my phone to see how much longer we might be driving in this. Yikes!

I put out an APB on my Facebook status:

“We are traveling in the winter storm in Texas on I-10. We are supposed to be in Galveston tonight for evaluation tomorrow and surgery on Wednesday. I’m feeling super nervous because the map says we are driving through rain, sleet and ice for the next 200+ miles. The windshield keeps trying to ice up. We have already passed several recent wrecks and vehicles stranded on side of the road. There is ice on the road. We are driving slow.”

Immediately, comments loaded with prayers and concern were posted. And while comforted by the prayers, I was also comforted by the fact that even if we ended up in an icy ditch, friends out there sort of knew where we were.

Needless to say, we made it to Galveston safely, Austin had his surgery, and I stayed with him when he was admitted to the hospital for two days afterwards. As a mom to a kid whose been in the hospital a few times, I have learned the art of keeping myself entertained. Social media. I depend on everyone else outside of those three walls and a curtain to entertain me. I report on what’s happening with my son, and I live vicariously through other’s posts.

After being discharged from the hospital we had to make that same trek home along I-10. The entire trip included 18 hours of driving. For some reason after 17 hours (not including the stop in Van Horn overnight again), I had a vision of my son’s feeding pump cord still plugged into the hospital room wall! I frantically started looking through his bags, and not finding it checked how much battery was left on the pump. It usually lasted only a couple days after a full charge because he is fed continuously for about 20 hours out of the day. It had one bar left.

My stomach sunk with the realization that until I could get the cord back or a replacement, I would have to bolus an ounce of liquid food into his g-tube every half hour for 20 hours out of 24 hours everyday until we got a cord (he can only tolerate about an ounce at a time without puking). And since I had never tested that way of feeding before, I assumed the worst and figured he wouldn’t tolerate it after a while and would be puking it up anyway. The early stages of panic began.

Then the light bulb came on in my head, and I thought, Facebook! I quickly posted an SOS in one of my special needs moms groups, not really expecting anything but commiserating comments. But, lo and behold within 15 minutes, another mom offered her extra pump cord if I could stop by and pick it up.

Where!?” I posted, and she quickly replied with her address. I Google mapped it, and it was only 15 minutes off our current route home. Seriously, I kid you not. Son's life saved...sanity saved. It's all the same to me.

No comments:

Post a Comment