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Medical Comfort

Addy-IV

For Addy’s first few years of life, she lived by a cycle of monthly laser surgeries: she was at Children’s Hospital for a new surgery every month; three weeks later, she’d go to the clinic for a pre-op checkup, then go back to the hospital for another surgery the following week.  Three weeks later, another pre-op, then another surgery; then another pre-op, and another surgery… you get the cycle.

The surgeries are minor, thank goodness, but many.  She’s had 43 laser treatments (so far) under anesthesia beginning at 5 weeks of age, each one variously bringing IVs, yucky-tasting drugs, and masks covering her face, and each one preceded by a pre-op appointment with a clinic doctor the week before.

Every medical encounter, with all its variables, carried the risk that Something might happen to turn her off from medical appointments.  Shots, exams, drugs, questions, strange surroundings, weird lights, being transported in a moving bed – all of these things can be painful or disorienting, and the likelihood that Addy might end up hating all things medical was always high.

Yet you’ve probably noticed (here, here, and here) that for Adelaide and her Port Wine Stain, medical settings are happy places.

So how did she arrive at her love of all things medical?  Why is she so comfortable as a patient?  I hope that for any parent reading this who has a child requiring a minor (if frequent) medical procedure, our insights here might help smooth the experience.

 

It comes down, broadly, to two things:

1) medical providers who understand children, and

2) some very intentional parenting at every single appointment.

 

First, those providers:

Seek out children’s medicine if at all possible.  All of Addy’s surgeries have taken place at a Children’s Hospital, where every single worker is oriented to children, not just as smaller versions of adults (which they’re not), but as their own species.  Their bodies are different.  Their brains are different.  One can’t always explain things to a kid, one usually can’t reason with a kid, and one forgets what frightens a kid’s brain, but at Children’s, all these things are on the radar of every nurse, receptionist, doctor, assistant, and specialist.  That’s not to say that they’re all perfect all the time, but it’s a great place to start.

Outside of Children’s Hospital, our other providers ‘get’ kids, too.  Her primary care doctor is a pediatrician.  Her dermatologist, while not a pediatrician, is a laser expert who specifically treats children with port wine stains.  Her ophthalmologist is a pediatric ophthalmologist (glaucoma is one of the possible complications from a port wine stain), and I can’t imagine trying to do that long, strange appointment with anyone other than a children’s eye doctor.

At these appointments, we’re just as likely to be asked about favorite cartoons as we are about recent colds.  The pediatrician doesn’t just look in her ears at a checkup, he ‘looks for’ Disney princesses or Marvel characters.  The ophthalmologist speaks more to Addy during her eye check than to me, and that’s perfectly fine.

With so many opportunities for bad experiences, taking your child to a provider that understands children is a great place to start.

 

The second major factor: the parenting.

If you want (or need) your child to be comfortable in medical settings, then you need to intentionally parent through every medical encounter, even the small ones.  You’ve seen some of my specific tips before, but this provides some wider context.

Always, always, remember this: You are the parent.  You run the show. Therefore, when you take your child into any medical setting, here are 5 things I want you to keep in mind:

 

  1. Choose your attitude wisely, for your child will absorb it and then reflect it. Be positive. 

When you visit a Children’s hospital a lot, you pick up on certain patterns, like this one: no matter the personality of the child, they’ll always end up reflecting their parents in the waiting room.

Pre-procedure parents are either Relaxed & Happy, or they’re Nervous About What’s Coming (complete with pursed lips and bulging neck veins).  They’re either smiling with their child, or tensing up like a guitar string about to snap.

Can you guess what happens to the child in those few minutes in the waiting area?

Within moments, they absorb the signals emanating from their parent, and then they unconsciously match them.  Happy parents?  Happy kid keeps playing.  Tense parents?  Kid does a double-take at the awesome toys in front of him, decides that maybe there’s something sinister about them, gets really quiet, goes over to Mom & Dad, and sits quietly, whining occasionally.

When it comes to your child in medical settings, remember that YOU set the tone.  You are the sky, and your child is the lake.  If you’re sunny and bright, then the water shines brightly, too; if you’re cloud-covered and gloomy, then the water is grey and cloudy, too.

You carry immense responsibility.  Your child will reflect you.  If you want them to come out of a clinic appointment happy, then you can’t walk in like you’re about to get that awful shot you got back in 1998.  If you want this surgery to not be a negative experience, then you can’t walk into the hospital looking like you’re on your way to a funeral.   If you want your child to comfortable in medical settings, then you must first be comfortable here.

And if you have to fake it ‘til you make it, then fake it, because your little copycat is taking their cue to be either happy or terrified from you.  Don’t lie about anything (more on that below); just make sure that their starting point isn’t “terror”.

 

  1. Remember your child’s natural ignorance.

Look around the hospital or examination room at all the strange objects from a kid’s perspective: you may be familiar with the blood pressure cuff, but your child is not.  For all he knows, it’s a torture device.   Preempt his fears by telling him what everything is.  Explain, explain, explain, and always with a positive attitude.  Good nurses and assistants are great at this; when one of them takes Addy’s blood pressure, they first hold the cuff up and say, “Do you know what this does?” with big smile and an air of intrigue, piquing the child’s curiosity.  “It’s going to give your arm a tight hug.”

There.  Done.  The strange object has been acknowledged and explained, just enough to reassure the child that it won’t be used for anything sinister.  Can you imagine trying to get a blood pressure reading without doing that first?  The poor kid has this thing strapped on his arm, there’s a buzzing sound, and then all of a sudden it cinches tighter and tighter and tighter and he’s wondering, “Where are we going with this?  Give me back my arm!”

Now, this ignorance comes with a bonus: Kids aren’t born knowing that medical stuff is bad.  That’s the burden we adults carry because we’ve visited hospitals when loved ones are at death’s door, when accidents change our lives forever, when babies are born dangerously early.  We understand life and death, and we know that the treatment can hurt more than the disease; if we had to check ourselves in today, we’d probably freak out.  So we expect the same trepidation from our children.

But to your child, all of this is new.  And a child is accustomed to encountering new things every day; that’s part of being a young human.  They’re constantly facing unfamiliar people and experiences and objects, whether at the grocery store or the hospital.  There’s no need for any of it to be negative at the start, so don’t heap that upon them.  They’re starting fresh.

Marvel at the blood pressure cuff with them – isn’t that cool how it works?  Handle the mask together and laugh about how it looks on your face.  Explain what these things do.  Mysterious unknown objects can be scary; familiar everyday objects aren’t.  Get a ‘play doctor’ kit with a stethoscope and blood-pressure cuff.  Ask the hospital if you can take home a mask so you can play ‘surgery’ at home and have a blast.  Let them be curious, help them explore, and keep everything positive.

 

  1. No surprises. Ever.

Some people want to distract a child so they don’t see a shot coming, and then they sneak it in, thinking that it makes the overall experience shorter and easier.  Trust me, that only works once.  The child cannot logically process, “Well, gee, that was SO much more efficient.”  All they know is, “OWW!! What?!?!”, and they will never, ever, ever again trust that stranger in the white coat, or even you in that environment.  Which means that the next time you carry them into a clinic or hospital, they’ll be inconsolable.

When I was a child, I was a patient in a hospital that wasn’t a children’s hospital.  No one there knew how to handle kids, and they administered shots by the ‘distract & surprise’ method.  It didn’t take long for me to distrust every white-coated person I encountered thereafter; I even freaked out if I saw a white winter jacket outside the hospital.

Do not let anyone (nurse, tech, or doctor) surprise your child with something unpleasant.  Take an extra moment ahead of time to warn your child what’s coming.  Note the word, ‘moment’ – no need to linger on the idea, just a few extra seconds to clearly, openly, and (most important) matter-of-factly tell your child what’s coming.  (Remember, if you freak out, they’ll freak out.)

Keith was the master of this disclosure.  Knowing we had a long medical road ahead of us, he left nothing to chance, even seasonal flu shots and routine blood draws.  Whenever a procedure came, here’s how it would go down:

The tech would prepare the shot.

Keith would turn to little Addy and say:

  • “Sweetie, you’re going to get a shot now.” [tell ‘em what’s coming]
  • “It might hurt, and that’s okay.” [matter-of-fact warning, NEVER negative]
  • “We’ll count to three,” [a consistent system she can rely on each time]
  • “…she’ll poke you once, and then we’ll be all done.” [finite ending – the light at the end of the tunnel]

He’d nod to the tech; they’d gently anchor her and count to three together, and the tech would poke Addy on “three.”  Addy might cry for a moment, but Keith would immediately scoop her up and affirm her: “There, see?  All done!  All done, just like we told you.”  [Remind her that it went down exactly as you said; she can trust you.]

“Now, tell the nice lady ‘thank you’.”

That’s right, he made her politely thank every tech and nurse who took care of her, even those who administered shots.  An attitude of thanks may sound crazy, but for a little toddler, the effort of articulating polite words of gratitude provided enough of a distraction (after all, that’s a lot of work when you’re two) to get her mind off any lingering pain from the quick shot.  And it fended off any possible “poor me” wallowing that could creep in among her many medical visits, to acknowledge the role of all caregivers around her, even those stuck doing thankless tasks.

Sniff, sniff, “Tay too [thank you].”

And with that, the event is done.  Your child knows that you’re trustworthy, consistent, and dependable.  We haven’t been allowed to wallow.  The pain is disappearing.  What were we crying about again?  Now, go get a sticker, and the day is made.  (If we’ve gone under anesthesia, then go get a popsicle, and the whole WEEK is made.)

No surprises.  Medical procedures don’t have to be pleasant, but they definitely should not be a surprise.  Ever.

 

  1. Be your child’s activist when it comes to details of treatment.

Even in these great settings, we occasionally encountered providers who weren’t perfect.  One clinic nurse was so nervous around kids that she clumsily administered a “surprise” shot to the leg really hard, without giving Keith a chance to count Addy to three.  Bad idea.  Addy felt shocked & betrayed, it took Keith over an hour to calm her down, and the poor kid limped for a week.  Not a good thing when we were bringing her in for a medical appointment or procedure every 1-3 weeks.

Needless to say, we were more demanding of procedure thereafter.  We had a lot grace for the nice nurse’s nervousness (after all, no sweet soul actually wants to administer shots to children), but we did discreetly discuss the event with the clinic, and they were awesome.  They understood that we couldn’t afford to have Addy not trust us, and they helped ensure that all shots thereafter followed a trustworthy procedure.

Remember, again, you’re in control.  Your child takes their cue from you, and the providers take their cue from you; if you’re not comfortable with some aspect of treatment, they’ll probably work with you until there’s some resolution.  But they can’t read your mind, so speak up.  Be kind and courteous, and they’ll work with you.

 

  1. Empower your child to do things themselves

I was surprised one morning when a nurse at Children’s Hospital offered to let Addy take out her own IV after a surgery.  Taking out the IV has always been a nasty moment, mostly because of the adhesive sticking to the skin.  (The needle is nothing compared to that sticky hand-hair-grabbing tape!)  Addy was always apprehensive about getting the IV out.

But then the nurse showed Addy how to pull it out herself, and it turned that moment from one of apprehension to one of empowerment.  Addy learned exactly how the IV worked, where the line was, and how fast to pull off the tape.  Altogether, it made her feel awesome.  No more tears.

Expect great things of a kid, and they’ll rise to the occasion.  I’m grateful for that nurse’s wisdom; she knew Addy could handle the task herself, even if I didn’t.

Keep your eyes open for opportunities to let your child do things for themselves in medical settings; ask the provider if a task can be done or assisted by the patient herself.  The IV task has been rather empowering for Addy, and there might be others.  The providers can help you find ways to empower your child to do things themselves, especially if they’re used to working with children.

 

Yes, perhaps you’d rather be at a tropical beach than at yet another procedure, but honestly, it could be worse, and in the grand scheme, it’s really not so bad.  So enjoy the little stuff; get excited about stickers and pumped about popsicles, because then your kid will, too.  Savor the time with your child (and a good book during those precious quiet minutes when they’re under anesthesia).  Life is beautiful, this laser treatment stuff isn’t so bad, there’s a whole team of people taking care of your offspring.  And with luck, your offspring will realize that it’s all quite lovely, too.

 

**Post script:  I will never forget the evening we went out to dinner to celebrate Addy’s 5th birthday.  By chance, we ended up seated in a booth just behind Dr. Steelman, the pediatrician who has seen her through all of her medical ‘stuff’ since she was a newborn – and therefore a provider she could either love or loathe.  When Addy caught a glimpse of him out of the usual medical context, her face lit up like a Christmas tree and she stammered excitedly, “Uncle Steelman!”

Priceless.

 

Going in for a Laser Treatment

So, you’re going to bring your child in to get zapped! Congratulations. I always applaud treatment, because I know that some parents have struggled to get sufficient medical advice to understand that, no, this birthmark isn’t going away on its own, and will in fact only grow with the child. So treatment is an excellent step forward.

Let me walk you through a few points related to treatments, based on our own experiences. (Again, I’m a lay person, not a doctor, and this is anecdotal advice, but hey – that’s what the internet is for, right?)

1. Get it done under anesthesia.
There are doctors who treat port wine stains without general anesthesia. I think they’re crazy. Here’s why.

A few years ago, my son developed a little red-dot hematoma on his cheek. It, too, needed a laser treatment. Since it was so small, Dr. Z. (Addy’s dermatologist) told us to just come into his clinic, where he would do a quick zapping with a bit of topical anesthetic. That’s the normal practice for the fancy clients who want their unwanted capillaries zapped. It gave me a chance to see what’s usually done behind closed operating-room doors. So we went in, put on special sunglasses, and helped hold Clarence while the laser zapped him.

It was noisy! And powerful! Like lightning suddenly exploding: BZZZZ! BZZZZ! BZZZZ! Pause. Then again: BZZZZ! BZZZZ! BZZZZ! The impact to the skin is often described to us by adults as “being snapped by a rubber band over and over, a hundred times a second.” BZZZZ! I could see the impact on the skin.

We had to wait through a moment of silence, then: BZZZZ! Another moment of silence, then BZZZZ!

Clarence was a trooper, but he did cry a bit.

That was zapping just a tiny spot on his cheek. When we were all done, Dr. Z. looked at me and said, “Now you can see why we do port wine stains under anesthesia.” Yes, sir, INDEED, I can. The sheer acreage of a port wine stain demands it. These are not little varicose veins or spotty hematomas – they’re big and spacious, and need *gridwork*, not *spotwork*.

Why am I telling you this? So that you can feel confident in your provider’s choice to put your child under anesthesia. Some parents (and even some professionals, and definitely the coverage providers) feel uncomfortable putting children under anesthesia. They may quote a report that came out a few years ago vaguely linking multiple trips under anesthesia in a child’s first two years with later behavioral issues like ADD. But what usually isn’t addressed in those conversations is the fact that children who require multiple surgeries in their first two years of life might have complicated medical issues, and that it’s just as likely that the later behavioral issues are caused by the underlying medical condition, the effects of it, or simply growing up in a hospital, and not by any long-term effect of anesthesia. Port wine stain cases are unusual in that, in spite of the need for multiple surgeries, there usually isn’t a major underlying medical condition affecting development (except for Sturge-Weber Syndrome), so we really don’t have much to worry about.

Addy’s had forty-three trips under anesthesia, and she is (in my humble opinion), a well-adjusted genius.

I can’t recommend anesthesia heartily enough. Anesthesia takes what could be a difficult and stressful experience (“BZZZZ!”), and turns it into a glorified nap.

2. The Day Of Treatment
Let me repeat something from the last sentence above: from your child’s perspective, all she will experience is *a glorified nap*.

Parents, please remember that when you bring your child in for a laser treatment under anesthesia. There is no great terror here. You will be STRESSED BEYOND BELIEF. That’s okay, you’re her parent, you’re *supposed* to be stressed when your offspring is taken from you and given a gas to knock her out. Totally natural.

But when she comes in for an outpatient surgery, your child will experience something like this sequence of events, all of which are pretty harmless from her perspective:

  • Arrive at hospital. (There’s a colorful mural on a wall. Pretty!)
  • Check in; the nurse dotes on you by taking your height & weight and giving you hospital pajamas to change into. (What an AWESOME COLOR.)
  • You wait for the various doctors and nurses to come and pre-check you. (Which gives you time to PLAY WITH TOYS. )
  • Various doctors and nurses come to pre-check you. (Excellent opportunity to practice your pleases & thank-yous, and say your name & birthday a lot, while they smile at you. SO MUCH ATTENTION!)
  • They wheel you back to the room. (A RIDE! AWESOME!)
  • They put a mask on your face and help you sleep. (Zzzzzzzz)
  • You wake up from your nap.
  • You eat popsicles after your nap. BEST. DAY. EVER.

That’s pretty much it, from your child’s perspective.

Here’s the key: whether this is a positive or negative experience rests in your hands, parents. No matter how stressed you are, you must help your child see everything new in a positive light. You are the sky, she is the water, and she’ll reflect your attitude. Be sunny.

Think of a first ride on a rollercoaster – it could either be terrifying or exhilarating, and a child watches their parent’s reaction to help determine whether the New Thing is terrifying or exhilarating.

Help her enjoy her day by pointing out the pretty mural on the wall. Help her get excited about the hospital pajamas, no matter how ugly they are. Tell her to thank every nurse and tech and doctor who dotes on her, even if they’re just flatly doing their job. Point out how awesome it is that she gets to play with toys, even if she has the same ones at home. Act like the mask with the crazy gases is worth smiling about. When she wakes up, help her procure popsicles and be amazed together that she’s eating popsicles at that time of day, without even eating lunch, and make it sound like the best day ever.

Okay, so that’s her perspective. Now yours:

  • You’re gonna cry. Accept that, make peace with it, stash a tissue in your pocket, and be ready. They’re knocking your baby out. The tears come, whether you want them or not.
  • Your maternal instinct will DEMAND that you tackle the people wheeling away or putting a mask on your baby. “YOU TOUCH MY BABY, YOU DIE.” It comes up suddenly. It’s unexpected. And you were feeling so civilized today. To avoid getting arrested, suppress this instinct as much as you can. Good luck.
  • Allow yourself to glance at the other families, patients, anyone else you see. Pretty much every single one is fighting a harder battle. This helps keep you grounded & sane.

Addy has enjoyed something about every surgery. She looks forward to each one. She wants to go back to see Dr. Z. and all the wonderful people at Children’s who dote on her and give her toys to play with and popsicles.

Next week, I’ll share a bit more insight on how we got her to like medical procedures, because a lot of intentional parenting went into it. But in the meantime, let me share a few other things to keep in mind that will help your whole week go better.

3. A few final medical tips

  • In the days leading up to a surgery, play around with putting things in front of your mouth and your child’s, like an anesthesia mask. Make something out of a brown paper lunch bag if you have to – the point is to get her comfortable with something safe in front of her face. (Okay, here’s the obvious but necessary caveat: don’t use plastic bags or anything unsafe. Feel free to teach her the difference here.) Make it a trumpet; try breathing into it; play doctor. Play, play, play! Then, when an anesthesia mask is really put on her face, rather than freaking out (“Get that weird thing away from my face!”), she’ll recognize the game.
  • Listen to the anesthesiologist when they tell you what they plan to do. There are many variations of the anesthesia cocktail they could give her (with or without anti-nausea, with or without steroid, with or without amnesia); take notes here so that you can, over time, determine what cocktail works best. (For Addy, it’s no steroids, no amnesia drugs, but with something for pain and sometimes a little something extra to help her sleep longer.)
  • There’s an “anesthesia hangover” that lasts about 3-5 days. Your child might be weirdly more emotional than usual. More likely to break down and cry. Emotionally fragile. That’s just the anesthesia hangover, and it will pass. Warn her teachers, warn her caregivers, and warn yourself. She’s fine, just a little emotional. Give her grace.
  • You probably won’t experience this, but there’s such a thing as “emergent delirium”; this affects mostly 3- and 4-year-olds, and occurs when a child ‘wakes up’ and appears functional, but their brain is still anesthetized. This happened to Addy at age 3; she seemed to wake up, but was still weirdly fogged. The ‘disconnect’ between awake & asleep brings on some unexpected behavior. (In our case, massive tantrums.) If you see your child completely breaking down post-anesthesia, don’t worry; she’s probably just processing the rest of the anesthesia, and IT WILL PASS SOON. Suddenly, the clouds part, and the child is normal again. The nurses can help you navigate this if it happens, but again, it’s unlikely.

These laser surgeries are nothing. No scalpel, no stitches, no chemo, no major complications. And yet they’re a big deal; you’re watching your child get knocked out for a medical issue, and your Maternal Instinct will be aroused. (DOWN, Mama Bear!) Allow yourself to maintain the perspective that this is a light burden, and that it comes with the blessed opportunity to help our children navigate the modern world with lovely marks on their faces, and to endow them with depth of character early in their young lives.

But just, like, try not to punch the nurse. Okay? Okay.

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