Noah

Tuesday afternoon we took Noah in to see his pediatrician. There was just something off with him. It didn’t take long for the pediatrician (Dr. Zarbock - I don’t know why but I always think his name is Dr. Spaceman like on the TV show 30 Rock) to confirm our concerns and have Noah admitted to the Riverton, Ut Primary Children’s campus. Nurses immediately drew blood for testing and placed an IV. After blood tests were inconclusive a spinal tap was performed which was also inconclusive. They also did a CT scan to check for any brain bleeding or abnormalities. By this time Noah was having trouble breathing and was hooked up to oxygen. 

He basically slept all the time. His symptoms included respiratory trouble, major lethargy, difficulty sucking, and no appetite. Because blood and spinal fluid tests showed nothing, Dr.’s were stumped. Finally, one of the Dr.’s mentioned that she though he might have been exposed to botulism but couldn’t be sure until additional tests could be performed.

By this time, as parents, Michelle and I were extremely frustrated and scared. We had no idea what was wrong with Noah and things just seemed horrible with all the tubes and wires hooked to him. Wednesday they added a feeding tube. On Wednesday night things took a turn for the worse. I had left the hospital around 1:30am to get some sleep. Michelle called around 2:30am to tell me Noah had stopped breathing on his own and was going to be transferred to the main Salt Lake campus. I went back to the hospital and already Noah was doing a little better but still needed to be transferred to the NICU in Salt Lake because the Riverton campus isn’t equipped with a NICU. Noah was air-lifted to the Salt Lake campus and Michelle and I drove up to Salt Lake and arrived around 4am. 

Noah getting prepped for the helicopter ride to Primary Children's in Salt Lake

Dr.’s immediately made Noah comfortable. By this time, botulism was the assumed cause of Noah’s problems but no tests had been conducted to confirm. Throughout most of Thursday Noah slept. He was intubated to provide a higher volume of oxygen and force him to breath and continued to eat via a feeding tube. Dr.’s wanted him to eat so they could eventually conduct a stool test and confirm their suspicions of botulism. Dr.’s also wanted to conduct an EMG  (electromyography) to check his muscle/nerve function but because of a muscle relaxant Noah was given to ease the insertion of his feeding and oxygen tubes, they had to wait. Finally late yesterday evening they were able to perform the EMG and results pointed to botulism. As a result of the EMG results, Dr.’s were comfortable with a botulism diagnosis and ordered  an immune globulin called BabyBig from the CDC in California. The immune globulin is an antitoxin and stops the botulism toxins from spreading in his body so he can start recovering. Infant botulism is caused by spores (found in the soil or certain foods like honey) that enter the body and produce toxins that interfere with brain-nerve communication resulting in paralysis. Noah will start on the antitoxin sometime today. He continues to be on ventilator support and a feeding tube.  

We are very happy with this diagnosis because botulism recovery is usually 100%. It will take awhile (as much as 2-3 weeks) but Noah will be his old cute self again. Other possible diagnosis were ver scary and life changing (muscular dystrophy, congenital disorders, etc.) We are grateful that Noah will recover and that they caught it in time to avoid any major complications. 

Wednesday morning after Noah was air-lifted to Salt Lake and not having any answers and being scared we were going to lose our baby, I sent a message to a good friend and former missionary companion who is a pediatrician. He has just finished his residency at Penn State’s Hershey Medical Center. I contacted him because botulism occurs more in Pennsylvania, Utah and California and thought maybe he had treated infant botulism. I just wanted to get some insight from someone I know and trust. His message was very comforting and optimistic. Those of you reading this that share our faith understand our beliefs relating to our savior and his atonement. My friend’s message in part read as follows:

“...the day before, when all was well and you didn’t know this was going to happen, the Lord did. And he had a plan to get you through it.”

Through out all the testing and frustration and thinking our little guy wasn’t going to make it, I have been comforted by the knowledge that our Heavenly Father has a plan and part of that plan allows us to deal with and overcome all pain through the sacrifice of our Savior. We have felt  the prayers and fasting offered on our behalf and are grateful for them. The road ahead will be long and trying, but with patience and faith, we’ll make it and eventually have our little guy back to normal. 

-Caton