ABC4 Video and Our Story on Infant Botulism- Coming Home

Barb Smith with ABC4 interviewed our family regarding our experience with infant botulism. Below is the video, and our story once Jonathan was allowed to come home.

Coming Home

When Jonathan was discharged from the hospital he was very weak, months behind in development, and distrusting of almost everyone, especially me. He had severe oral aversion and wouldn’t let anything near his mouth.

Because I moved into Jon’s hospital room during his stay, he associated me with the pain he had suffered. When I would try to feed or comfort him, he would arch his back and flex his entire body in fear.

Tim began working with Jonathan to teach him how to drink from a bottle and be a baby again, and I worked on slowly earning his trust.

While in the hospital, Jonathan suffered through intubation, a spinal tap, an MRI, Cat Scan, hundreds of blood draws, IVs, the placement of feeding tubes (that went up his nose down into his belly) a machine that forced air into his lungs creating an artificial cough, multiple gags, and numerous other painful procedures. It took us months to teach him that he was home and safe.

Tim researched how to overcome oral aversions and patiently worked with Jonathan for hours each day. I managed his feedings and stayed awake at night to be sure everything went OK. Because he was fed through a tube that went up into his nose and down to his belly, he had to be closely monitored. Babies that are fed this way (NG feedings) can easily displace the tube, or try to remove it altogether. If this happens during a feeding, the baby can aspirate (his lungs fill with liquid) and it can cause pneumonia or worse.

It was exhausting for both of us, but we were so thankful to have Jonathan home from the hospital, that it was worth all the work and stress.

Success with Feedings

Finally, after weeks of patient attempts, Tim was able to encourage Jonathan to drink a few teaspoons of milk. He continued working with Jonathan until he drank an entire ounce. This was a tremendous victory! It took weeks before Jonathan had the strength and desire to drink more than an ounce at a time, but eventually he did.

Germaphobes R Us

Now, we just had to keep him healthy. Because he was so weak, it was imperative that he didn’t get sick. He was diagnosed as immune compromised, and we were told to avoid crowds of people and “shared air space.”

Tim purchased air purifiers for every room in the home and we quickly became germaphobes. We didn’t go to movies, church, busy shopping centers, and avoided having people over. We even missed family events (including Christmas morning) because we couldn’t risk bringing home any germs or viruses to Jonathan. It was a long winter.

Happily Ever After

The good news? We made it! Jonathan is now healthy and happy. Our family is eternally grateful for all the miracles we witnessed during Jonathan’s battle with botulism, and all the support we received from our family, friends and employers.

Although I would never choose to repeat this experience, there were joys and times of gratitude that are so intense that the memories are sweet and beautiful. And even though I may not have been a super-duper sweetheart in the hospital (I gave the doctors and nurses an earful more than once!) I am also very grateful for the love and care he received from the staff at Primary Children’s.

A special shout-out goes to Tracey, Carrie, Kristin, Megan, Denese, Jessica, Dr. Osterling, Dr. Laarman, and Dr. Sakonju. I love you all to the moon and back!

Related posts: Blame it on the Frickin Contacts, Frickin Mommyhood, and Infant Botulism, a Frickin Nightmare