Infusion days. Ugh. I mean, who WOULDN’T want to spend hours sitting in a chair, hooked up to an IV? Especially a child? Not my kid, and I’m guessing not your kid, either. But I’m here to help you get through it. Hopefully. Let’s be honest, it’s still going to kind of suck, right? But here are my very best tips for surviving a long infusion day.
Prepare yourself for the IV or port access
How bad is it going to be? We’ve experienced the gamut here. From terrified port access, to fighting IV access, to mostly sitting still and letting them poke him. Make an honest assessment of how hard it’s going to be, and prepare yourself appropriately. You. Not your kid. You. Prepare YOU. Take a deep breath. Go to that place where you go when you need to grit your teeth and just power through. Lock those emotions up somewhere safe and deal with them later. Promise yourself beer later. Give yourself a pep talk. Cry in private before you get there. Whatever you need to do for you, do it.
Prepare your child for the infusion.
You know your kid best. Some kids do better with advance warning, at least a few hours. Some kids do better finding out immediately before something happens. Give as much information as they can handle, to whatever extent it will help them. Teddy and I have found that he prefers a quick overview of what’s going to happen EACH TIME. Even Infusion #15. He knows what’s going to happen as well as I do, but he likes to go over it. “When we get there, we’ll go to the library and get a book, and then we’ll go up and say hi to (the check-in lady). When (our usual nurse) comes, we’ll go back in the room, get your weight and some Sprite and they’ll check your blood pressure and get everything set up, and then (the child life lady) will come and the nurse will put in your IV. It’ll hurt, but just for a little bit and then it’ll feel better. Then we’ll just sit there for a few hours, and you can play on your iPad, and they’ll come do your blood pressure, and you’ll get a prize, and then we’ll go home!” He likes me to repeat the part about it’ll only hurt for a minute and then it’ll feel better, and we also usually review sitting still and people holding his arm down, and that he can choose to watch or he can choose to have them count. We usually have to go over all of this information a few times.
Prepare your child for the poke
Whether it’s IV placement or port access, infusions tend to involve needles and being held still. Even if your child has a PICC or Broviac or similar, they still need to hold still while everything is sterilized and the line is accessed. I can’t imagine how awful it must feel to be a child being held immobile by adults with needles. Even if they’ve done it a hundred times, it still can’t feel great. Does your child do best with a pep talk? Distraction? Talking them through it? Cold? Numbing cream? J-jet? Cold spray? Sitting by themselves? Sitting on your lap? Laying down? Snuggling with you? Try all of the options that sound good to your kid and let them discover what works best for them. Through trial and error, we’ve found that Teddy does best with less fuss and no pre-treatments. It’s weird. But I think he’d rather just get it over with.
Pack All The Things
No, really. How long are you going to be there? We’ve never had an infusion last less than 3 hours. And then, for us, about 4 hours of driving, as well. Bring the things for your kid. Bring more than you think you’ll need. I usually bring activities, schoolwork, and some toys, and he packs some stuffed animals, and we bring snacks (and his tube feed). And obviously also his tablet. And bring the things for you. I bring a book (or Kindle) for me, a notebook, knitting, and sometimes my laptop. And chargers. And drinks. #packallthethings I usually walk in to our infusions with my regular backpack, plus his backpack, plus an extra bag. I look like a hoarder. But we’ve yet to run out of things to do.
Be prepared for sensory needs
Does your child have sensory needs? Or do they just get really squirreley sitting with an IV? Be prepared for this. Teddy tends to need breaks to run and engage in other gross muscle activities, but that’s not practical on infusion days. A, we’re really not supposed to leave the room and B, he’s all hooked up to an IV pole. So, we adapt. We get up every once in a while and do some moving around things like jumping and dancing. He also really responds to deep pressure and soothing movement when he’s having a particularly hard time.
Does your child use a weighted blanket that helps in stressful situations? Bring it. A compression shirt? Wear it. Fidgets? Bring them. Does your child use headphones or music to address sensory concerns? Bring them. Don’t be afraid to turn the lights down or off, if that will help.
Take advantage of Child Life and other hospital amenities
Most hospitals that do infusions on kids are big enough to have a child life department. Use them. They can help with the poke part, they can bring in toys or devices or games, they can sometimes even send someone in to play with your child. Some hospitals have an area in the infusion center where child life is stationed and kids come to them, and some hospitals prefer to keep the kids in their own rooms and send child life to them. However your hospital works, ask your nurse what the options are!
Does your hospital have other amenities? Ours has a patient library that will give a free book to every child each visit – and we always stop to get a new book before infusions if they’re open.
Prizes and Rewards
These are distinctly different, but often confused, so I’m lumping them together. In my house, a prize is a small treat or toy that is not earned. It just is. I usually bring a small prize to infusions – something that cost a few dollars, max, and that will be interesting enough to keep him busy for a little while. A Hot Wheel, or some playdough, a small toy of some sort, or some sort of new activity. A new maze book, or a small puzzle, or a game of some sort.
We also usually wrap up with another prize – or, really, it’s just lunch but it’s framed as a prize/treat. We always “get” to go to McDonald’s afterwards. (The reality is, it’s lunchtime or past it when we leave and we have to eat anyway, and McD’s has cheap ice cream that he’ll eat.) But it’s always been presented as a special treat, and he sees it as a special treat, and that’s all that matters.
You can also choose to do a reward. I don’t usually like to reward in medical situations. I feel like he does the best he can with most situations, and if he’s misbehaving, it’s usually because he’s not getting some need met, and I don’t feel that a reward is fair nor effective for Teddy in medical situations. But your kid might be different, and if rewards do work well for your kid in medical situations, go for it!
Don’t forget siblings
Obviously, you won’t forget them, but if you’re bringing siblings to infusions, you’ll not only need to consider their needs in terms of stuff (snacks, activities) but also in terms of their emotional needs. It’s stressful for brothers and sisters to watch their sibling being hurt, even when they know it’s for a good reason. Be sure to let siblings know that they can wait elsewhere during the hard parts if they want. Alternatively, maybe they want to help. Each of my kids has gone through a phase of feeling very important because they were the ones who got to help distract Teddy during a medical procedure. They each took their job very seriously.
Well, there you have it. My best tips for infusion days. Please comment with YOUR tips!