When we began our journey into the unknown (medically fragile world), we had aquired 3-4 homecare companies…each supplying a different part of “E’s” needs. Having all of the things that we needed to care for him at home, meant that not only could he live at home, but we would have everything needed to care for him in the same way as they would at the hospital.
A few years later, a new company (ThriveRx) began that could meet all of his needs in a single company! That was huge. They were family friendly and even created a parent advisory group where we could give our input about the products we used in caring for “E’s” needs. Through that, our voices were heard and some changes have been made. One of those changes was a pump that could operate in any direction…on it’s side, upside down, etc. The old pumps had to be kept upright all the time which meant having to chase around a busy little toddler on tube feeds. As he got older and the Enteralite Infinity pump became available to us, he could wear his feed in a tiny backpack and play more like a typical child. ThriveRx always provided two pumps so that if there was ever a malfunction, “E” would not have to go without his feeds.
Unfortunately, when our insurance changed a couple of years back, we were forced to switch homecare providers. We had been with ThriveRx for approximately 11 years, so that was challenging. We had to revert back to having several different companies, as all of the others were specialty providers (ie. enteral, ostomy, etc), and could not meet all of the same needs.
Fast forward to this week…we discovered that “E’s” pump was no longer feeding him. When I called the homecare company that handles his feeds to ask them to send a replacement, they said that they would not be able to get one to us until the following day. When your sole source of nutrition comes through a feeding pump and you are fed 20 hours a day, waiting until the next day does not work. So I persisted with them (nagged them) until they relented and sent a pump later the same day. Then, we discovered (the following day) that the replacement had the same problem. The company insisted that the problem had to be with “E’s” tube or something else since we had 2 pumps in 2 days go bad, and advised that I call the doctor to get him checked out. I assured them that I had already checked his tube and the pump thoroughly and that even while running it into a cup, it still had the same issue. It’s not my first time at this “horse and pony show”…”E” has been my joy and my profession for 19 years…I think I have this down. What ended up being their temporary solution until they could order a new pump (usually they just send refurbished ones) is to give us the old kind (Kangaroo Joey) that can only stay upright…so he is stuck to an IV pole for his feeds until the new Enteralite Infinity arrives. Grrr.