What I wish I’d known about home infusions

Posted Wednesday November 30, 2011 by Melissa

Elaprase

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.

How we got here

ElapraseFor 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.

What I wish I’d known

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…

  • That is is sometimes quite hard to find an infusion nurse when you live in a more rural area, even if it is a “suburb”.
  • That it is even harder to find a nurse with good pediatric experience.
  • That it is still harder to find a nurse with good pediatric experience and good port-a-cath experience.
  • That is it next to impossible to find a nurse with good pediatric experience, good port-a-cath experience, and Elaprase experience. (If you have another infusion family nearby, the best bet is to try to use their nurse!). Mine every source you have to find the best nurse, including the nurses at your current hospital.
  • That sometimes the best nurse might be based on attitude and fit. One can learn more about pediatrics and ports, but it’s hard to learn a better attitude or personality.
  • That you get a big box of supplies and you’re supposed to know what to do with all of it.
  • That “Open and Inspect” is code for “Figure this all out on your own.”
  • That you can’t get all the same supplies that are used in the hospital and you really have to know what to ask for.
  • That sometimes even when you know what to ask for, have a picture of it, have a product code number and a website, customer service will still try to tell you that you don’t know what you’re talking about. Have confidence.
  • That it is helpful to have a closet, shelves, a table for prepping, and a fridge (with a temperature alarm!) dedicated to infusion supplies, hopefully in the same room as where the infusion will be. Also helpful is to organize the supplies in gallon sized ziplock bags with all the supplies needed for an individual infusion (ours are actually further broken down into separate bags for access, drug prep, and de-access – grab and go is my motto).
  • That having several other moms on speed dial/text during the first several infusions is a LIFESAVER.
  • That when $9,000 worth of drug starts emptying onto your carpet, catching it in a bowl really won’t allow you to reuse it, but it will make you feel better if you stare at it and think it might turn into $9,000. That is, until your son dumps it down the drain.
  • You really can hold your child in a figure 8 hold and get him accessed. It might take 6 sticks which really, really sucks (for you and him), but it can be done.
  • You really can hold your child in a figure 8 hold while he screams three different times for three different accesses in one day (1 not numbed) and not have a complete and utter breakdown until after the kids are in bed that night.
  • Learning play therapy and desensitization (more to come in a future post) can be so valuable to helping your child deal with all of the medical trauma they go through.
  • It’s really dumb to not have someone, anyone, Bueller? to help you during the first several infusions. Spouse, friend, someone, in addition to the nurse. Really dumb. I’m … really … dumb (raising my hand).
  • Seriously consider medication, for you the parent, during the first several infusions. I’m not kidding here.

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.

Elaprase home infusion supplies

Paying it forward

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.

Happy home infusion!

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4 Responses to “What I wish I’d known about home infusions”

  1. While i no longer do home infusions for the very reason it is that much easier to go to the hospital when you are an adult – I do agree with most of these things – always also have a back up at the local hospital who can access the Port just in case the nurse really is particularly bad and you yourself cant access and have no other option. Also DO NOT let the nurse mix the med UNTIL the IV or Port is accessed just in case the nurse cannot get the line accessed! Have 1 person you deal with at the insurance company and at the specialty pharmacy as well.

    Erica
    http://www.rarelydefined.blogspot.com

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  2. “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.”

    I am so glad to hear it is not just me. I find that my Tuesdays are twice as busy now just in preparation for infusion Wednesday! Preparing family meals a day ahead for the entire day (we are often gone 7am – 6pm), organizing childcare, packing entertainment… the list goes on. I now have a checklist to remember it all. I was starting to think I was making a bigger deal of this than it needed to be! So glad to hear it is normal!

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  3. I wish there was a “like” button for these! I totally remember our first few home infusions. We are 3 years in so we are so organized. Luckily, we got great nurse the first go around. She is part of our family now! And reading this reminded me that I needed to call Accredo and order our supplies, so thank you Melissa!

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  4. Thank you so much for your posts. Your blog is EXACTLY what I was looking for. I am very new to this, my son’s Hunter(2) and Kingston(1) were diagnosed January 16th with MPS 2 and are still waiting to start on their infusions. We just visited the infusion center last Monday and will be driving an hour an a half to the center starting April 10th. The doctors office told us that they did not have any at home infusions at this time. I’ve been thinking about getting my LPN in hopes to be able to give the boys their infusions at home so we wont have to drive 3 hours every week and make it easier on all of us. You have given me hope that I will be able to do at home infusions. I know I have a lot more to look into. I’m looking forward to the MPS Society Meeting in Buffalo this summer, it will be a great opportunity to talk to other parents and their experiences. Thanks again.

    My blog for my boys is http://www.wewillfighttilltheend.com

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