“Something is wrong with Maddix!” I sobbed to my husband over the phone. He’d just gone to work a few hours earlier. I was alone and terrified because I didn’t know what was wrong.
My son’s cry was frail, he refused to nurse, and he seemed lethargic and exhausted. My son wasn’t acting like my son.
I decided I wanted to take him to our local hospital immediately. My husband called for relief and rushed home to take us in.
After hours in the waiting room, we were finally called back for triage. Maddix started to fall backward when I sat down in the tiny nurse’s office. That wasn’t like him.
My 4-month-old son only had the head control of a newborn. The triage nurse very rudely said, “He’s only 4 months old, he isn’t going to have much head control.” I was dumbfounded. Was she really acting like she knew my son better than me?
This experience was off to a dreadful start.
After the rude triage experience, we were finally taken to a room. It had just been cleaned. The housekeeper was openly pissed about us being placed in her freshly cleaned room. Her eye roll and glares made that more than obvious.
Another hour passed before the doctor came in to see my son. It felt like an eternity.
I told him every symptom my son was showing. I was already frustrated and frantic, and — at the end of the serious list — I mentioned his foreskin being a little red and irritated.
At this point, the doctor focused on nothing but my son’s penis instead of the fact that he no longer had any head control, couldn’t eat, etc. He diagnosed Maddix with phimosis. A condition in which tight foreskin can’t be pulled back over the head of the penis.
If you didn’t know, the foreskin isn’t retractable in infants. In fact, it can still be intact at the age of 10! And this ignorant doctor tried to force my son’s foreskin back — which did nothing but cause pain for my baby boy.
After six hours of waiting and explaining, we were treated like idiots, my son was tortured, and we were sent home with no testing at all. We had no answers.
A difficult decision.
We finally made it home at around 4 a.m., and I told my husband something was wrong. I could feel it. But our options were limited.
We could either try to drive to another hospital an hour away (with no sleep) or wait to see a different doctor after the shift change at the local hospital. We discussed it for a few minutes, then decided to wait to see a different doctor locally. It was the safest choice for everyone in our family.
That was the longest 2-hour wait of my life. We all tried to sleep but we couldn’t take our eyes off of Maddix.
We rushed back to the same hospital and I immediately knew it would go better than last time.
This doctor actually listened to my concerns — and testing was started immediately. He had no fever, but his blood test results showed low blood sugar and dehydration. I can’t remember what test results caused more concern from the new doctor, but he was ready to find my son more support.
They decided to start an IV in my tiny boy, which was one of the hardest things I have had to watch. The nurses struggled to get an IV placed. After 4 attempts they finally decided to call in “the pro.” He put an IV in my son’s head and wrapped it up in minutes.
Seeking better help.
The doctor still couldn’t seem to find what was going on with our son. He decided to transfer us to a better-equipped hospital an hour away.
I rode in the ambulance with my son, worried about what this transfer meant.
The ER nurses and doctor came to see us right away when we arrived. They listened to every concern and decided what tests to run. A flu swab, a CT scan and…a spinal tap.
I was horrified but we started the testing right away; flu test, negative. CT scan, negative. Spinal tap, negative.
What was wrong with my baby?
I felt hope slipping through my fingers. I thought they would never figure it out.
After what seemed like a decade, the doctor came back in and told me he might have an answer. One of his residents told him Maddix was showing all of the textbook signs for botulism.
Botulism is a rare poisoning caused by toxins produced by Clostridium botulinum bacteria. It causes paralysis, starting in the face and spreading to the limbs. If it reaches the breathing muscles…respiratory failure.
This illness is so rare that Kentucky only sees 1-2 cases per year.
The test for botulism is heartbreaking. They take a stool sample and inject it into a mouse. If the mouse becomes paralyzed before it dies, then it’s positive. The mouse always dies, though.
It was going to take several days for the results to come back, but the doctors didn’t want to waste any time. They ordered a medication called baby B.I.G. from California — the only state that carries it. They flew it by helicopter and administered the medication right away.
The doctors explained to me that the medication wouldn’t “cure” my son. It only stops the progression so he wouldn’t get worse. My sweet boy had to get better on his own.
It wasn’t until 2 days after receiving the medicine that we finally got our results back. Our innocent baby boy tested positive for botulism. Our doctor made the right call to treat our son without waiting.
The extended stay.
We spent the next week in the PICU. My son was hooked up to oxygen and had a feeding tube. He was attached to every machine you could think of. It seemed impossible to hold him because of the wires and tubing.
The nurses and doctors in the PICU were amazing. They hugged me with no judgment. They understood me for being an absolute train wreck and gave me encouragement when I needed it the most.
Slowly — very very slowly — my boy started to get stronger. Eventually, we were ready to be moved to “the floor.” It was amazing to see my son leave the very place he should have never been.
We were in our new room for another week and one day. Our new room came with new staff that made that extra time Hell. But my son kept fighting.
A physical therapist tried to help him regain some of his strength during our extended stay. And we ended up continuing physical therapy for a few more weeks after he was released.
Looking at him today, you wouldn’t even know he endured so much at just 4 months old. He’s now a spirited 3-year-old.
Watching him fight this illness was one of the scariest times in my life. I thought I was going to lose my baby boy.
But Maddix is one of the strongest people I know. I’m so lucky to call him my son.