Thriving on Home SubQ Infusions for your Child

Have you just learned that you will need to start home subcutaneous infusions with your child? Are you new to home infusion? It can feel overwhelming and scary, but you’ll soon find the process isn’t difficult and it’s easier, cozier, and less germy than dragging your kid to the hospital or clinic for infusions!

We were recently able to switch back to home subcutaneous (subq) infusions after doing in-hospital IV infusions for 6-8 months. While I didn’t mind letting someone else do all the work for a change, having to drive 4 hours round trip and spend several hours in the infusion suite on a regular basis was getting pretty old. We’re both happy to be back on home infusions!

Starting home infusions can feel intimidating at first but, like everything else, it’ll soon become routine. Here are our top tips for learning and thriving on home subq infusions.

1. Do it the same time, every time.

I don’t know about you, but I thrive on routine. I am less likely to make mistakes or forget things when I do them the same time, every time. I set things up in the same room, in the same place. I get out the supplies, look them over, sort them the same way every time (things I need to get ready for the infusion, things I need for the actual stick, things I need for wrapping up the infusion), etc. And I do the process exactly the same way, every time. The more routine it becomes, the less likely I am to forget something important.

I don’t need to for infusions, but if it’s helpful, write out the steps in a way that makes sense to you and set it where you can see it while you prepare. Your infusion supply company, or the manufacturer of your infusion medications, probably supplies some sort of training materials that include a checklist, as well, but feel free to write your own if theirs don’t work for you. Just don’t leave anything out!!

2. Put it on your calendar.

Schedule your infusion day like you schedule everything else. We have a lot of flexibility as far as what time of day we can do my son’s infusions, but we still need to do them on the same day every week, so I have it in my calendar as any other appointment. It not only ensures I don’t forget, but also helps to make sure we don’t overschedule on that day and end up infusing at midnight or something.

3. Set up code words or mantras

I don’t mean code words, like using baby names for the process. I don’t personally believe there’s any benefit to making up innocent sounding substitutes for medical words. (Like nurses sometimes say “arm hug” instead of “blood pressure.” That’s idiotic IMO.) We call the infusion an infusion, and the needle a needle, but our code word (or phrase) is “it’ll hurt for just a minute, then it’ll feel better.” He needs me to say this every time. He will ask every time. “How long will it hurt?” and I am to respond “it’ll hurt for just a minute, then it’ll feel better.” We have a few little call-and-response tidbits like that we use for various medical things – it’s like a mantra that’s reassuring both for the information as well as for the predictability.

4. Have a preferred activity, snack, drink, or treat

Subcutaneous infusions involve a fair amount of sitting around with a needle stuck in you. I usually offer up a treat of some sort. A movie or TV show of his choosing, a device he wants to play on, an activity he likes to do, a sibling to come play with him while he sits, stories of his choosing. A special snack. If I did infusions on myself, I’d sure set myself up with a snack, drink, and preferred activity!

5. Figure out what time of day works best

Though we’ve done infusions at other times as necessary, we eventually figured out that doing infusions right before bedtime was ideal. He’s already winding down, the routine of getting into bed and being still was already established, but being allowed to watch TV or play on devices is enough of a treat to make it seem special. Maybe Saturday mornings work best for your family. Or some afternoon after school. If you homeschool, perhaps starting an infusion at the start of the school day would work best. Play around and figure out what works best for your family.

6. Find a comfy spot

Let your kiddo pick where they want to be for their infusion. We usually do infusions in the bedroom, which is comfy and where all our supplies are located, but occasionally we’ve done them in front of the Xbox, lol, and sometimes in the family room while we all watch a movie together. He’s the one who has to sit there, so he gets to pick where to go.

7. Play Therapy

Ask your supply company to send some extra tubing and dressing so your child can give a toy an infusion or two – either before you get started, or while you do his infusion, or after you finish up. Teddy likes to wrap up each infusion by giving several of his favorite stuffed animals their own infusions, and we keep a box of supplies for this purpose.

What ways have you found to thrive on home subq infusions?

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All my Hot Tips for Surviving an Outpatient Infusion with your Child

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!

Remaking the Holidays

For many of us with not-quite-typical kids, holidays can be a stressful time. Different food, different mealtimes, houseguests, travel, extra activities, so many people, and so much busy-ness.

Does that work for you and your family? If so, that’s fantastic. Keep at it. Don’t change a thing.

But maybe, instead, you feel stress. Or the ever-present worry that you’re not doing enough. Or maybe that you’re doing too much. Or that you’re missing something. Or that you could be enjoying this season more than you are. Or that your KIDS could be enjoying this season more than they are.

How do you fix this, though?

At the risk of getting a particular song stuck in your head, I think you have to start by letting it go. Let it ALL go.

Just dump it all.

Build your holiday season from the ground up.

I wanted to say “build your perfect holiday season from the ground up,” but that’s not really very realistic. For many of us, what our kids can handle – or what is safe for our kids – conflicts with what we parents really want. So let’s let go of that, too. Let go of the idea of a perfect holiday.

How about “build your realistically doable and emotionally comforting holiday from the ground up”?

I bet you’d like this next part to be all about how you do that. But I don’t know how you do that. I mean, I can make it sound all easy – balance your needs and your kids’ needs and do what works best for you!!

Of course it’s not that easy. I don’t know how you finish. But I do know you start by letting go of all of the “should” statements about the holidays. “We should (whatever).” Let them go.

For our family, we still do a few of the “should” things. We have local family and we should see local family at Thanksgiving and Christmas. But we are able to accommodate Teddy’s needs (and the needs of the other kids) into our “should”ing. For example, when we host Thanksgiving, Teddy is not required to be in the rooms with all the people the whole time. He can hide out in his bedroom with a timer for a while, but then he has to join the group for a while (usually with a timer) and we go back and forth like that. He needs practice with groups of people, but it gets overwhelming quickly. This strategy helps integrate my husband’s need to celebrate holidays with his family and our son’s need to get a break from the overwhelm of too many people in his home.

We’ve completely let go of most Christmas “should”s. We should go enjoy some of the holiday events in our community…but there are so many germs and honestly few of our family really enjoy those things.  We should go to Christmas Eve service…but so many people go to church on Christmas Eve when they’re sick and it isn’t worth getting the flu for. We should visit more far-flung family…but travel is hard and I really don’t enjoy it.

Instead, we focus on activities that we all enjoy and that are realistic for our family at this phase in our lives. We make Christmas cookies, because all three kids (plus an extra kid who lives next door!) really enjoy this activity and it’s doable for me without too much stress. We do a handful of Christmas crafts, but we abandon them quickly if the kids aren’t interested. We watch a lot of Christmas movies and we have a good time with snack food while we decorate our Christmas tree.

It’s easy to think we should have more decorations, but we don’t enjoy the process of decorating, we really don’t enjoy the process of un-decrating, and extra decorations don’t add anything to our daily happiness… so we don’t do it. I used to think we should do more service projects over the holidays, since that’s the thing to do, but it’s actually easier for us to do service projects and volunteering when it is NOT Christmas – and service organizations are usually in more need of volunteers at other times of the year, anyway. Maybe we should spend more time with extended family, but it’s better for us as a family to spend that time together with just us. We don’t get enough relaxed “just us” time as it is. Most people believe they should keep presents a secret. But that doesn’t always work for us. Knowing there are secret presents in the house REALLY bugs Teddy. So we let him know what some of his presents are in advance, and keep the rest a super secret. Once he knows what a few of them are, he’s less anxious about the whole present thing and can enjoy the anticipation.

This is what works for our family. What works for your family? Why don’t you try letting go of all the “shoulds” of the holiday season and give yourself the freedom to find out?

Exercising in the hospital

We just passed 1 year since Teddy’s last inpatient stay in September! Whoohoo!

So, fortunately, I haven’t had to exercise in a hospital in over a year. But I’ve certainly had plenty of times when I needed to.

Exercising while you’re in the hospital with your child has so many benefits. It actually does help keep your spirits and your energy up. Sitting around a boring hospital room all day does nothing good for your mental health, especially if you’re there for weeks or months at a time. I also find that doing healthy things for me while we’re inpatient is also a huge mental boost – I am Doing Something Healthy For Me, Yay Me!

Plus, the obvious physical benefits of getting regular movement and exercise. Many people stress eat in the hospital; exercise will help counteract that. (I stress eat veggies in the hospital, which I know is really weird, but I also tend to hit the sugary beverages and carb-loaded snacks a little heavy, as well.) Plus, unless you specifically make an effort to move around during the day, it’s way too easy to spend the entire day just sitting.

But HOW can you exercise in the hospital?

This is NOT SILLY

I would suggest that first you need to get over the idea of looking silly. This is NOT the weirdest thing your child’s providers have ever seen. Also, I’m not suggesting here that you exercise to the point that you are a sweaty, red-faced mess. Feel free if you like. But that’s not what I’m talking about here.

Walking

If you can leave your child’s room, go for a walk. If they can leave with you, plop them in a wheelchair, carrier, or stroller and bring them along. Walk as briskly as you can without being rude to others in the hallway. Your individual hospital policies will vary, and your individual hospital will vary. We’ve had times we’ve only been able to pace up and down a rather short hallway. We’ve also had times we were able to slip away from the unit and walk outside. Walk as much as you can. We usually go for 2-3 walks a day when we’re inpatient if we’re able to leave the room. It kills time, it gives us something else to look at, and it feels good. (Let’s not talk about how many times I use those walks to buy a scotcharoo.)

Stretching and Yoga

If you do yoga, it’s pretty easy to adapt to a hospital room. If you don’t do yoga, you could start! There are YouTube channels with beginner yoga routines – pop one on and give it a try! If you’re not into yoga (I’m not), just a plain ol’ stretching routine can feel really good on a body that’s stressed. Don’t push anything, just gently stretch out your muscles. I try to make it a point to do this at least once a day while inpatient.

Resistance Exercise

I find muscle-building exercises to be easier to do inpatient than aerobic exercise. I try to keep an exercise band in my hospital suitcase for resistance, but even without that, there’s pushups, situps/crunches, leg raises, squats, etc. (I’m typing this post in the outpatient infusion clinic and I’ve just done a set of squats and lunges to wake myself up a little!) I’ve been adding quite a few ideas to my Hospital Life board on Pinterest if you need help getting started.

Keeping it Private

If you want to minimize the chances of being “caught” exercising, consider these strategies.

• Post a note outside your child’s room to please knock, mom is exercising inside. (This is far less embarrassing than the note I used to put out, which was “please come back later, mom is showering inside with the bathroom door open.” Teddy would freak out if I shut the bathroom door.)
• Find a private parent room. Most hospitals have family break rooms, but some hospitals have little private rooms just for you. Sometimes these rooms are intended for sleeping, but as long as you’re being quiet, there’s no reason not to use this room for exercising.
• Hit the gym. Some hospitals have on-site gyms for family use. Our primary hospital has a gym in the next building that parents can use for free. I’ve never taken advantage of this, but I know parents who have and they’ve enjoyed the break from the hospital as much as the exercise itself.

Ummm…People are Staring…

Have you ever been out with your special needs or medically complex child and noticed someone staring? Or felt like someone was staring?

OF COURSE you have.

We all have.

But what should you do about it?

My take on this issue might be different from many, but I say let ’em stare.

“But it makes my kid feel bad!!”

But it doesn’t need to.

I personally make a conscious choice to assume that people are staring because they’re completely blown away by our awesomeness. And I teach my children this attitude both with my words and with my actions.

Whatever the situation. This is not limited to special needs or medical issues, lol.

We live our lives and if people want to look, well, it must be because we’re so amazing they can’t help themselves.

The truth is probably that they’re just curious. As common as public meltdowns, tube feeding, and suction machines might seem to those of us living this life, most people have never actually seen a feeding pump, or a trach, or a child who is so anxious about some tiny thing that they cannot possibly move on from it in that moment. And, like every single one of us, they look.

And be honest. You stare, too. “oh, I would never!” eh. Most of us stare. Not meanly. But we do. I catch myself watching children struggling in public – or, actually, watching their parents. I try to give a wink or a nod of solidarity, but there’s not always the chance. But the truth is, I’m taking mental notes. “oh, that’s a good thing to say. I should try that next time.” I stare at people with fancy accessories for their equipment. “ooo, look at how they have that attached to her backpack. That’s a good idea.”  I stare at little kids wearing mini backpacks – and, as it turns out, 95% of them are just backpacks and not feeding pump backpacks, lol. Sometimes I’m looking at people simply in an effort to give a nonverbal “hey, us, too” but we don’t ever make eye contact. They probably walk away thinking “man, that lady was so rude!”

It’s NORMAL to look at things that stand out. And it’s actually a good thing, in the big picture. We WANT people to look at things that are out of the norm. A kid screaming at the park brings unwanted stares if your kid is screaming because of a meltdown, but so, so wanted if they’re screaming because a stranger is trying to drag them into their car. I WANT adults around us to look if my kid starts throwing a fit – I want them to look at least enough to determine that the situation is safe and under control.

Taking a second look at things that seem out of the norm is a self-protective feature of humans – and it’s actually something I actively teach my children to do. If something looks out of place, look at again, and look until you’ve either categorized it as unconcerning, or you’ve determined that it is concerning and you’ve implemented a plan to deal with it.

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I grew up with a mom who was a Type 1 diabetic, diagnosed in the late 1950s. She got her first insulin pump back when insulin pumps first became available (one of the first in the country to get one). Back then, they were huge, ugly things. It came in a giant black case that looked like a weird, hard-sided gun holster. And my mom loved it. It was such an improvement over self-injecting. She loved it so much that if she caught people looking at it, she’d tell them what it was and what it was doing for her and she’d take off the cover and she’d show it to them. She’d give them a whole education about diabetes and insulin. People were staring? GREAT! Because this insulin pump is amazing and they should learn all about it!! They SHOULD stare at this marvel of technology that is letting me live so I can see my children grow up.

People would regret being caught staring sometimes – not because she had crafted the perfect verbal zinger to hurl at them, but because her enthusiasm about her insulin pumps far outweighed their interest. (She was a teacher not just by vocation but by calling.)

I credit that attitude on her part for helping me, all these years later, deal with staring with my child in such a positive way. I’m not into talking to strangers like she was. I’m not even that into talking to people I know. I’ll answer questions if people ask them, but I’m not going to approach people and start gushing about my kid’s feeding pump, for example. But I carry her enthusiastic attitude about medical equipment that improves lives with me, and I carry her “staring? of course they’re staring, this is awesome!!” attitude with me, too.

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(I would be remiss if I didn’t note that often, we FEEL like people are staring, but nobody is, in fact, staring. I have had so many times when whatever I’m doing FEELS so weird and unusual that I’m certain people must be staring. Whether I was breastfeeding in public, dealing with vomit in public, or handling a beeping feeding pump, it felt like people surely MUST be staring. But if I took a moment to pause what I was doing and glance around, I was reassured to find that, in fact, nobody was paying us any attention. So if you feel like you’re sticking out like a sore thumb, and everyone must surely be staring, sometimes it’s good to take a moment and look around – perhaps you’ll find that nobody around you really cares, after all!)