The story begins with a mama whose fourth, ‘surprise’ son spent the first seven months of his life in the hospital with many numerous life threatening complications. He has undergone close to seventy surgeries and procedures in Minnesota and in Ohio. One series of surgeries left him in a medically induced coma for forty days. He endured four cardiac arrests, one requiring more than ten minutes of chest compressions. This is only a tiny glimpse of his miraculous little life thus far.
At two months old he was given a tracheostomy, or trach for short, in order to survive. After his third cardiac arrest, doctors knew there was something else going on. They quickly discovered he had a hole in his airway. Not good. After watching him die three times, cutting a hole in his neck in order to survive was not up for discussion.
No one can prepare you for what it’s like to watch your baby cry and hear no sound. Having a child with a trach is an incredibly overwhelming, terrifying, and isolating experience.
After an eight-hour class to learn how to keep their son alive with a trach, they will never forget the feeling when they changed the trach for the first time. Changing a trach on a doll is a whole lot different than on your own child. It is so scary. So many things can go wrong. The feeling of literally having your child’s life in your hands is indescribable. They didn’t want to do it, but knew they had to.
The thought of taking him home with all his medical equipment was daunting. His room looked less like a nursery and more like a hospital room. Caring for him with a trach at home is yet another overwhelming, terrifying, and isolating experience. There is no “code blue” button at home.
They are several years out from those experiences and now trach changes and those machines don’t feel quite so overwhelming. Although he still has his trach, he is thriving, continuing to defy the odds, and winning more hearts with his captivating personality and infectious smile.
While in the hospital, Jack’s Basket and Fiona’s Hope were baskets they received when he was a baby. These gifts said, “I have been in your shoes.” For a moment, you don’t feel completely isolated. Although different stories, someone else has been there, understands what you are experiencing. It normalizes something that isn’t. This is a very powerful thing. Different, but both incredible organizations inspired this mama to do something similar for families or caregivers who would bring their child home with a trach. When we give purpose for our pain, great things can happen.
In March of 2020, by word of mouth referrals, she began to create baskets she thought would be helpful. She wanted to give things that would be useful and give encouragement that doing hard things is possible.
What began as a way to update family and friends has slowly evolved into the website for Superman Sam’s Survival Kit. His story is not over. Those of you have been following will still be able to get updates on his journey via the blog.
To learn more about his story, click below…
What People Say
I’m a speech-language pathologist in Tallahassee, FL working with an 11 month old who has a G-Tube, trach & is on the vent. His family history is not a good story overall, and he’s currently in medical foster care. He’s being well taken care of in foster care. He’s begun to sprint from the vent and use a PMV. He will be celebrating his 1st birthday this weekend. I reached out to [S^3 Kit], and I just received one of [their] amazing baskets! I cannot wait to give it to him this Saturday! So much thought and effort was put into this basket. Thank you so much for what you do, your kind heart and desire to ‘give back. Again, you are something special! Thank you and God Bless you!Jill, Speech-Language Pathologist
[S^3 Kit] has brought many of these baskets to me to give to our NICU families with babies going home with trachs, Families are very appreciative of this generous gift.Deb, NICU Nurse Manager
The basket lets families know they aren’t on this journey alone. The hospital does a good job of preparing families how to take care of their child at home, but not how to prepare for their child coming home. The basket gives them the tools to help with this. The organizers are a favorite, they are so helpful when families are given boxes of [medical] supplies and don’t even understand yet what those supplies are for. It gives them the confidence the CAN do this! [S^3 Kit] makes HUGE positive difference!Wendy, Home Care Case Manager