This is a recounting of a true life event and subsequent episode many months later. My son is ventilator dependent. He also relies on five other machines daily to keep him alive. So car travel looks more like an ambulance ride. And I used to be able to handle it as the lone adult in the car, until the day we left the hospital about two years ago, and it was a horrifying, near death experience.
My son does not “transition” well anymore. Meaning moving him from one place to another, especially into the wheelchair or carseat. It’s one of the main reasons we moved to home nursing exclusively almost five years ago. Trips in the car meant multiple stops along the way to suction him to clear his airway – it would get closed off and he would stop moving air into his lungs. The lack of head control contributes to his hunched over stature in the carseat, and physically this makes keeping his airway open even more difficult. It would take him about 40 minutes (nearly the length of our commute) to readjust and start settling down and stabilizing. If you can imagine doing this two times a day, it just got to be too stressful on him and on us – alone in the car.
Two years ago, we got him out to attend an event for special needs families. But it was cold that day, and he could not keep his body temperature up and became hypothermic, just 45 minutes into our visit. When this happens, his other normal body functions begin to malfunction also, and once again he could not keep enough oxygen saturation to survive. So we brought him home to stabilize him. It took 3.5 hours to stabilize his body temperature and oxygen saturation. And little did we know we brought home a parting gift that day – THE FLU!! So two days later he was hospitalized in the PICU because his body cannot fight off infection like that. It manifested in ways untraditional for most children – he had weird symptoms that were hard to control. But a few days later we got him stable enough to take back home.
Because Medicaid and insurance companies write policies the way they do – we could not call a nurse to ride home with us. My husband was heading back to work, so I was taking him home on my own, like I had done hundreds of times before. But that day would be different. That day my son would not keep his oxygen saturation up, and I was not getting anything up to clear his airway. We pulled over at least five times on the way home from the hospital – trying to race home knowing I could stabilize him there. I was shaking, the sky was pouring down on us, and I wondered if my son would die while just trying to drive home by myself.
I finally got him home, stabilized him, and called my husband to tell him I would NEVER ride alone in the car with him again. His body cannot take it. He might die just because I am driving.
Fast forward to today. We are forced to see some doctors on an annual basis. Today was a specialist, endocrinology. We had a nurse with us AND now our toddler too. It takes about an hour to gather everything we need to prepare to take him outside the home. It takes two people to get him loaded and unloaded from the house to the car and vice versa. And out of the car and into the wheelchair. Fitting him and all his machines plus additional items needed like diapers and medical supplies is a chore to say the least. But we loaded up and off we went.
Of course the handicapped parking on a Monday morning at the Baton Rouge Clinic is all full. So we opted to park at the pediatric building, and walk through back to the clinic side to get to our doctor. We got called soon enough and were getting settled into the room when it all started going downhill. Braden’s vent battery started beeping – the internal one. You see his vent SHOULD have back-up power for about six hours. Today, about an hour off the wall electricity, his vent was telling us it was now on internal power, which lasts a whopping 30 minutes.
We tell the nurse we have to kick this thing into high gear and see the doctor quickly, or it will be weeks or months before we can bring him back again. The doctor knew immediately what was going on and gave us a 90-second visit. HE WAS WORRIED. I knew I had some auxiliary power adapters for the cigarette lighter in the car, so hopefully that would work to keep his ventilator working. This is the machine that breathes for my son and is the reason he is alive. If the machine does not respond to the car charger, we were in a world of trouble – and we had about 20 minutes now to make it home before we had to pull out an ambu-bag to manually breathe for him.
Enter my NASCAR driving skills. SAFE, but fast. I used my right arm to help stabilize the nurse (like the arm seatbelt moms do) in her carseat as she is turned around working to stabilize Braden, because on top of his ventilator losing power, his airway wouldn’t clear. Dear Jesus, can you please take THIS wheel so I can turn around and help??
Five minutes in to the drive home, his ventilator started taking the charge from the car. Praise God, one less issue to deal with while we now attempt to get his airway open and his oxygen saturation up. I’m still NASCAR safely driving us home. We are about 5 minutes from the house and he finally stabilizes his numbers. My nerves are shot.
Today was a reaffirmation that I can NEVER ride with him alone in the car. Our only other option is to call an ambulance to come take us to appointments – which is an entirely different set of problems I won’t get into here.
We get him back inside and in his room, putting him on oxygen to let his body rest. He is comfortable and stable. I am unloading the car and setting up his machines in his room when I realize I don’t hear my daughter playing. I yell for her, no response. I run to the living room and she is not there, I yell for her again – no response again. SHEER PANIC sets in as I see the back door cracked open. Did she run into the street? Did she hide under the car? Why is she not responding? I run outside and it takes me a minute to find her, she is nowhere in my first line of sight. I see her crawling up on the stroller around the corner.
My God, it’s not even 9:30am yet and I had near death and life experiences with both of my children. What kind of mother am I anyway? It’s days like this I feel unfit to parent at all. I feel like I fail even when we gained a victory.
But I take a few deep breaths. I thank the heavens for watching over my children today. We are all alive and okay. I will take my daughter and do some “retail therapy” for shoes. I will get a Sonic drink to treat myself and satisfy my emotional overload with a vanilla Dr. Pepper. My momma said there would be days like this…
I will confer with my mom friends and we will share our mom fails because we are in this together.