Botulism: Something Is Seriously Wrong
I met Joshua a few months back and felt an immediate connection to him. We ended up talking about quite a few things. Business, aspirations, goals and, of course, family. During our talk, it came out that he and his family had a tough beginning to what should have been the best time of their lives.
I’ll let Joshua explain.
“ Something is seriously wrong ”
That was the text I got from my wife about my son, Maddix, at 9 p.m. while I was working a long shift at my “day job.”
That was the beginning of a nightmare of poor care, stress, and almost losing my son.
When your child isn’t acting quite right, a visit to the E.R. seems like a good idea. “It’s something that they can fix and send us home. Then life will go back to normal, I can go back to work.” That was the idea, anyway.
Hopes and dreams…
Being a father was something I always wanted and it took a while to get there. Most of the women I used to date didn’t want kids, then my wife and I tried for over a year to get pregnant.
So our son is our tiny blessing. His first shrill cry in the delivery room was one of the most transformative moments of my life. I’ll never forget it. I wasn’t a father, then I was.
Watching Maddix grow, learn, and just be happy for the first several months of his life was bliss. Even through the sleepless nights and pure confusion of being a first-time parent.
Something is seriously wrong.
Remember that ER story I started to tell? Well, at around 3 and a half months old, Maddix got sick. Very sick.
I rushed home from work (at a job where it’s actually illegal to do that) and took my wife and son to the E.R. Because that’s what a good father and husband should do.
We checked in, telling the triage nurse about his symptoms – no fever, not latching to the breast in over 16 hours, no bowel movement in 4 days, extreme lethargy and lack of motor function. The nurse simply told us, “He’s only 3 months old, he doesn’t have great head control,” as if she knew our son better than we did.
We waited for 3 hours just to see a doctor who diagnosed him with a urinary tract issue. Without running any tests. Yes, after dealing with rude staff for 6 hours, we were discharged with a misdiagnosis completely unrelated to his symptoms, based on a hunch.
Sometimes there are no GOOD options.
Something is seriously wrong. Our son was going downhill fast, it was 4 a.m. and we had a decision to make. Should we drive 45 minutes on no sleep to get him to another hospital, or should we wait until the shift change and take him back?
Neither one of us was confident behind the wheel at this point, and risking all of our lives to see new doctors didn’t seem like a good choice. Neither did waiting, but it was the safest option for everyone.
So we got an hour and a half of sleep that we didn’t want, woke up and took him back to the hospital. Shift change is at 7 a.m., something I’m unfortunately familiar with, so we went back at 6:30, knowing that new doctors would be on-site by the time we made it out of the waiting room.
The new staff was fantastic, they started our son on I.V. fluids and actually ran tests! The doctors found several anomalies in his blood tests, urine tests and x-rays, but they were unable to explain what was happening, so they transferred Maddix to the nearest children’s hospital, an hour away.
Waiting is painful.
Once at UK Children’s Hospital, things changed quickly. They ran every test imaginable and took his symptoms into consideration. We eventually found that he had contracted botulism – a rare bacterial infection that causes limb paralysis and lethargy, eventually progressing to respiratory failure. Botulism very nearly took his life.
The next two weeks were spent at the Children’s Hospital in the Intensive Care Unit as he was nursed back to health with a feeding tube and oxygen. I had to go back to work while he was sick, but I spent every night that I wasn’t at work sleeping on the floor of his room. It was all too real. Something is seriously wrong.
Surviving a rare illness makes his life even more valuable to my wife and me. He’s our tough little monster. When you almost lose your child, you learn what the concept of “family first” really means.
Family first isn’t an easy philosophy to live by.
Putting family first means taking time off from work to drive an hour every day to the nearest children’s hospital. And sleeping on the floor in your child’s room.
It means burning through your savings to be there because your family is more important than your money. Parking isn’t cheap, and it gets expensive paying for extended family members to come and go so you can have their support when they can’t afford to help, themselves.
Sometimes, putting family first means sticking with a job you planned on leaving because you need to provide and your plans went up in flames. Your entrepreneurial dreams don’t come first, anymore. Family does.
I always thought I was a family man, that I’d put my family before anything else. This experience puts my values to the test. I’m definitely a family man.
What are you willing to sacrifice?
I’m a work-a-holic, even now, after my son’s illness is a memory and he is fully recovered, I tend to work too much. But I’m still doing it with the idea of my family in mind.
I see Maddix crawling, exploring, and jabbering “Mama” constantly, and I know that anything I do to make his future better is completely worth the personal cost.
I’ve learned that I can switch gears when necessary. If my family needs me to provide, I’ll work overtime, I’ll brainstorm new ideas for income, I’ll do whatever it takes. My spouse and child will never go hungry – I’m too determined for that.
But I’m more than willing to throw out all of my plans to be there for my family. I’ll do whatever it takes to never miss an important date. I’ll piss off my employer if it means I get to be by my son’s bedside. And I’ll gladly burn that bridge if my boss doesn’t accept that my wife and son are more important to me than any job.
It’s a personal value that I would sacrifice anything for. And now? Now we no longer have to say that something is seriously wrong.
Joshua is an amateur philosopher, father, entrepreneur, and artist. Visit JoshuaGraphic.com for more articles on life and his latest adventures in video.