Mike and Deb Bachman have been married 23 years and are parents of Heather, Markus and Noah. A long-time patient of PHS, Markus was born with his airway and esophagus as one tube down through his right lung and a stomach the size of an almond. He had a trach for eight and a half years and still has a feeding tube. He attends school when he is well, and is also a member of his future high school’s bowling team. Below, read as Deb writes about their efforts to improve Markus’ food pump.
“Can this be improved?”
This is a question I frequently ask myself. I have this strange desire to be organized despite the chaos of raising kids, particularly one with intense medical needs. My brain analyzes the way we store his medical supplies. Which item should go on the shelf? Which goes on the floor? Where do we wash the equipment and what is the best way to dry it? How do we arrange and plug in the machines?
Today I feel that our system is pretty efficient. Or at least more efficient than last week. The way that we arrange, store, and adapt these life sustaining items has changed over the past 14 years. My son has also greatly changed.
Markus is no longer the baby that laid still in his crib. The quiet baby who could not yet wiggle or roll and unknowingly crimp and block a feeding tube. Nor is he the toddler who dragged the additional previous days feeding bag tubing behind him. Those extra two feet gave him a tiny bit more freedom. Only thing was, we could not look away because he could roll and wrap himself up in it. Markus is nothing like the small kindergartner, oblivious to the fact that his feeding bag tubing could catch on something and the pull the tube right out of his abdomen.
Then there was 4th grade, the year Markus realized that no one else in his class wore a backpack or feeding pump all day. In 5th grade came the words, “I just can’t wear this thing anymore, Mom!” My heart sunk, and I finally realized, it was way past the time that I should have asked myself, “Can this be improved?”
Advances in Equipment
We had seen many advancements in other medical equipment over the years. Home IV therapy had become simpler and more portable for us. Markus’ favorite uncle now wore a tiny insulin pump on his belt. Markus’ CPAP machine had gotten smaller and easier to take places.
The feeding pump in the backpack was smaller and lighter than his original pump, but was it the best we could do? Was my son going to have to deal with the embarrassment and discomfort he felt when that feeding pump alarmed out in public? There had to be a better option.We prayed and researched. There was no other option at the time, but we had an idea.
I spoke with two major medical equipment manufacturers. The first phone call ended with a referral to a support group website for people with feeding tubes. The second call seemed very promising. We met with the California company, but shortly after, we stopped hearing from them.
Partnering for Better Development
Then by chance, I saw a flyer about DesignWise Medical, a non-profit right here in Minnesota that develops pediatric medical equipment. We met with them, and now we are planning to meet with a local company that has adopted this feeding pump project along with DesignWise.
I had originally hoped that Markus would not have to wear a backpack in middle school. That did not happen. Next year he starts high school. We are prepping for it now. Today I am more hopeful than ever that an improved feeding pump system will soon be created. Until that happens, I will keep asking myself and others, ”How can this be improved?” We already have a couple ideas, but I always welcome new ones.
Pediatric Home Service and DesignWise Medical are seeking families currently using a food pump to participate in a conversation regarding the pros and cons of the current pumps on the market. We want to hear what is and isn’t working from you. Participation will require at least one in-person meeting for conversation and brainstorming with the group.
PHS wants to provide you with the products that allow your child to thrive at home and we would love your participation in the conversation. Please comment on this post or e-mail email@example.com with your contact information if you’re interested in joining and we’ll get in touch with you right away.