Setting aside a day of your life each week to go to the hospital can be hard. That alone is hard, but add to that the lunch and supply packing (and unpacking), horrendous traffic, waiting on the pharmacy, cramped infusion space, forgotten electronics, rush hour returns, calls to pick up other kids, and the list grows … and it can easily drive one to home infusions sooner rather than later.
For us, we opted to continue hospital infusions longer than most for the simple reason that Case enjoyed it. He is very social and he knew everyone from the information desk volunteers to the cafeteria cleaning crew, from the hospital PR staff to the inpatient nurses. Plus, he was content to get his infusions strapped in his stroller, which meant less risk that he would bolt … and pull out the line. Once Case started the clinical trial, we also felt we had enough on our plate rather than start home infusions then, so we waited.
But when he realized this summer that his brothers weren’t going to the hospital, and in fact, they weren’t going to school either, but instead, going over to a friend’s house to play? Well, that started the home infusion process. That and my records of longest wait for drug? 2 1/2 hours. Longest drive home? 2 1/2 hours. Worst dinner in the car? Leftover peanut butter & jelly and Cheetos.
Although many MPS (and other disease) parents start home infusions, we rarely have time to share our stories, our warnings, and our “best practices” if you will. Here is my attempt after three home infusions so far. I wish I had known…
If you’d like to hear the entire saga of our first several infusions, I’d be more than happy to share it by phone. Speaking of the phone, if you are gearing up for home infusions, message me and I’d also be more than happy to be one of those lifeline moms in case of questions or disasters.
The moral of this story is that I never want another family to have to stress about home infusions more than necessary. If I can at least remove the supplies stress, that is a win in my book. So, here is an Excel listing of our supplies – what we got initially, what we get periodically, and what we get every 4 weeks/monthly. You can also click on the image to the right to get a PDF version. The information is what comes from our delivery verification sheets from Accredo Health Group. If you use Accredo, then hopefully all of this might be helpful when you start home infusions. If you have a different provider, just the Product Descriptions and Layman’s Terms sections might help you make sense of things. Caveat: The regular supplies listed are just a monthly amount, but for the first few months, probably get double the number of many of them. First, for the first month or two, you don’t have a system and you might actually use double that amount . Second, even if you don’t, you need to build up a stockpile for those times when your child may unfortunately go through several needles to get accessed, grab the sterile drape, or otherwise needs more than the one supply allotted for that infusion.
Keep in mind that this is not what we received initially or even close to what we might have received had we not made initial specific requests. Things were added, replaced and eliminated over the first three infusions, including things as important as the very pump itself, dressing kits, tubing, flushes, dressings, and extras. In addition, what we use may change over time and you have to get what works for your child so here is my disclaimer – “I am not a doctor and I am not recommending any particular medications, supplies or course of treatment!” But hopefully, this can alleviate some stress and confusion on that first infusion day. Please comment if this has been helpful to you.