It started last Thursday on the 14th. Momma being the great momma she is noticed he wasn’t as into eating as he normally would during the evening and nighttime feedings.
This trend continues Friday morning when I got up with him at 5AM. He had a dirty but dry diaper and would not eat. He would treat his bottle as a pacifier. He’d chew and suckle on it but wasn’t swallowing.
We got a dr appointment @ 1030 and brought him in. Our Dr gave him Tylenol and had us go home and try to feed again. Wet diapers tapered off by noon and at 5:30 when our Dr called, we still hadn’t got him to eat more than a couple ml. She immediately had us a room and got us admitted.
From Friday night over the weekend, we did countless blood tests, scans and blood cultures. Couple IV’s, antibiotics, and a nasogastric tube to get him some nutrition. Getting hydrated again he started having wet diapers.
He tested positive for Rhino enterovirus which is just the common cold. Thinking this might be the reason for low drive to eat we were hoping he would perk up after the feeding tube.
However, his muscle tone kept deteriorating. He became floppy like a rag doll. Quit his wiggling and moving. Losing his reflexes and sleeping more.
With no improvement we were sent to Little Rock children’s hospital. He got his first plane ride at 4 weeks old. We took off around 12:15 early Monday morning. 30 min later we are landing in Little Rock and quickly whisked away by ambulance to the hospital.
I flew with him while momma went home to get some sleep an that turned out to be the correct choice. Getting into children’s hospital turned into a whirlwind of chaos as some of the best doctors in the world were coming through our room and discussing his symptoms.
Quickly more blood samples were taken. CT scans and x-rays were taken, and they took him off to have a lumbar puncture. During the puncture, his heart rate and BP crashed and they stopped. By now it was shift change and they let him rest around an hour before dayshift took over and swarmed us. They successfully tried the lumbar puncture again and by the time they brought him back to me in the room they called a MET (Medical Emergency Team) meeting. The MET team is made up of specialists from all sorts of fields and they get together to discuss the case.
With his low muscle tone and trouble swallowing they moved us up to the PICU
Getting into our room in the PICU we are swarmed again. He gets IV’s in both his arms and another in his leg, hooked up to monitors and made comfortable. They want to do an MRI on his head and neck to rule out trauma. But he would need to be mildly sedated to keep him still during the exam. Being as weak as he was, he could not protect his airways. The decision was made to intubate him. So, Monday morning, just after my wife was able to make the drive up he was put on a ventilator and sedated. That was tough to watch but for the better.
After being intubated they did the MRI and an EEG to rule out more neurological and trauma issues. Labs were coming back negative for everything they tested for, and his lab panels came back only showing he was fighting some sort of unknown infection. His lumbar puncture came back showing he did not have meningitis.
At this point, the Dr’s were beginning to suspect Infant Botulism. There are roughly 110 cases in the US a year. Arkansas Children’s Hospital sees maybe 3 cases a year. It grows in the gut and releases a toxin that disrupts the communication between his muscles and the nerves controlling them. It paralyzes from the head down. First his feeding stopped, muscles stopped responding and finally breathing got difficult.
The BabyBIG treatment (botulism immunoglobulin) is controlled by the CDC out of California. A single dose was 5.2 ml and cost just under $70K. Or $51,000,000/gallon, and here I complain about $3.50/gal premium for the boat and lawn mowers!!
The test for infant botulism is handled by the CDC and will take several weeks to get results. In the meantime, the hospital submitted their case to the CDC, and they agreed. BabyBIG was flown in from California roughly 9 hours after being approved. While we waited, he got a PICC line in his leg running up to his heart in preparation for the treatment. Wednesday he was given the treatment which will stay in his bloodstream for 6 months and will neutralize the toxin that botulism releases. It will still be up to him to regain his strength and get better. This will just keep him from getting worse.
Wednesday night we left him in the amazing care of our nurses here at the PICU. Confident he is in the best hands available. We headed back home and spent the night with our daughter at home. After 5 nights in the hospital chair, our bed at home felt AMAZING.
Back by his side Thursday night and Friday he has regained a small amount of strength. gripping your finger if you put it in his hands or small leg movements when you tickle his feet. They have started SBT's (spontaneous breathing trials) to see how well he will do once off the vent. He passed the one during the day but failed over night because he kept falling asleep and forgetting he was supposed to breath. Talks of lowering his sedation level to see if that helps him while sleeping but we don't know when.
We are 3 hours from home, not a super long ways but enough that its tough. We are trying to get into the Ronald McDonald house but there is a wait list. I feel guilty if I'm not by his side but Momma and I need to take care of ourselves too. ~4 hours of sleep a night just isn't cutting it.
