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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.

Her Eye

I have some catching up to do here!

In August, Addy went in for her 38th laser surgery at Children’s Hospital to zap off her Port Wine Stain.  It was more complicated than usual: we added a minor eye procedure.

Addy’s port wine stain wraps around her right eye; all those blood vessels (which I compare to weeds) grow with her, building up and adding pressure to the surrounding tissues.  It’s for this reason that we have to check her for glaucoma every year — the blood vessels often add significant pressure to the eye itself, affecting eyesight.

In her case, she’s been cleared of of glaucoma (so far), but her right eye stopped draining tears.  Apparently, the port wine stain was squeezing the tissue around her tear duct drain, which runs from that little hole in your bottom eyelid down the nasal passages to rid your eye of all the tears it constantly produces throughout the day.

Addy’s drain had been squeezed shut by all the blood vessel ‘weeds’ growing around it.  The issue was diagnosed after we noticed that her right eye was always watery, to the point where random tears would run down her face when she wasn’t crying.

To fix the problem, her ophthalmologist (the same wonderful Dr. P. who has been checking her for glaucoma every year since babyhood) suggested that at Addy’s next surgery, as long as she was already under anesthesia, she would simply insert a tube that would stay in Addy’s drain, propping it open like a stent.  Then, about 3 months later, we would visit her clinic, and she would do a simple procedure to pull it out through the nose.

Easy enough.  Addy went into the surgery as excited as ever.  (This kid has the best attitude about medical procedures.)

IMG_4234

They marked her face with an arrow to indicate the correct eye to mess with (as if her port wine stain wasn’t obvious enough an indicator, but hey, I’m all for being careful):

However.  Turns out that the port wine stain complicated the issue a bit…

Dr. P. tried to thread the tube through the top tear duct first (for plumbing reasons I can’t explain).  Turns out Addy’s top duct was either missing or blocked by a granuloma she discovered there.  Which means we now needed to schedule a follow-up within the next two weeks, rather than 3 months…

So she went down that bottom drain instead.  She first threaded a ‘probe’ down the drain to open it up, ahead of the actual ‘tube’ that would remain in place.

The probe went in just fine; Dr. P. threaded it down, then pulled it out…  But in the few seconds it took to get the tubing ready, Addy’s drain completely closed off.  There was so much sudden inflammation (blood) that the tube would NOT go in.

Turns out all those crazy weed-like blood vessels of her port wine stain are deep inside, and the first probe irritated them.  (Helllooooo, bloody nose!)

So she had to apply something that they use to shrink blood vessels in the nose to get the inflammation down before the tube could go in.

She finally got the tube in place.   Addy went to a post-op recovery room to wake up slowly (my request, after some previous anesthesia adventures), and then was delivered to me groggy.

She felt much worse than normal.  The right side of her face hurt.  There were painkillers for the ‘owies’, but nothing to help the general discomfort of having been ‘messed with’.  A cold compress was applied.  She asked for low light, kept both eyes closed, and groped to put my hand on her face; the gentle pressure soothed her:

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While I usually use having ‘been in a bar fight’ as an apt description of her face after a laser surgery, she even had the swollen puffy-eye look going this time  after all was said and done:

And yes, I’ll admit to feeling a bit emotional at this procedure.  She had never needed me (or my hand) as much as she did this time.

As usual, I took my sweet time scheduling that follow-up appointment… and when I finally did, this was the catalyst:

Yep – the tube came out!

Aggghh!!  I’m freaked out by most medical issues (almost fainted getting my blood drawn; I honestly have no idea how I’ve brought three children into this world), but anything eye-related *especially* freaks me out.

I thought I might pass out when Addy, playing with other kids at a festival, stopped, pulled something out of her eye, then ran up to Daddy and presented The Tubing: “Dad, I think this came out of my eye!”

*faint*

I went ahead and scheduled that appointment.

Long story short, all good news.  The granuloma up top is nothing to worry about, and the fact that the tube slid out so easily means that it’s already done its work opening up that drain.  No need to put it back in.  Her tears are draining again.

Excellent.  Done.

Her eyes are fine.  Life is good.  And of the million things that could possibly worry parents, we are incredibly, ridiculously blessed to hold this one.  We can worry about the developmental effects of going under anesthesia so times in early childhood; we can worry about equipping our gorgeous daughter for a flawed world full of flawed humans who may see her error cruelly; we can worry about her perfect eyesight being blighted by a zealous overgrowth of errant blood vessels.  But not once do we have to worry about her death, disfigurement, dismemberment, or impairment from any of these things.

That’s what all those visits to Children’s Hospital give one (I’d hope) — perspective.  Of all the things that worry parents, I thank God in his gracious mercy for handing us this; it’s a beautifully light burden to carry.

That doesn’t mean I didn’t choke up in the recovery room there.  But how blessed I am that my parental instinct is piqued by something so slight that my daughter ends up looking like this at the end of such a long morning:

 



Blessed, indeed.

Laser Surgery Number 37

Addy recently went in for her 37th laser surgery at Children’s Hospital!  She had a blast.  And no Versed this time, so she remembered the whole thing.

I had lost track of counting these procedures somewhere in the mid-20s, so I was very glad when our curious anesthesiologist, having seen the volume of records in her file, took the effort to count up the number of procedures leading up to this one.  I’d been planning such an investigation but hated the thought (so much paperwork to sift through!), so it made my day to have the work done for me.  Thirty-seven!  How time flies.

It was a perfect day for Addy.  The routine was followed by all, and that made my organized eldest very happy.  We arrived early enough for her to spend a few minutes playing with toys in the waiting room.  The nurse called her back to the pre-op area and took her height and weight.  Armed with hospital jammies, Addy settled into her hospital bed and changed clothes so the medical stuff could begin.  “Here’s my arm, so can you take my blood pressure now.”  She played with her favorite Princess toys (yes, she has favorites here).  Everyone asked their routine questions: the pre-op nurse, the dermatologist, the anesthesiologist, and the nurse anesthetist. No recent colds, history of bleeding, only one slightly loose tooth (not enough to worry about).  Addy’s bed was wheeled into the O.R., she got a combination of bubble gum AND cherry flavors in her mask, and she went to sleep.  She woke up groggily in the recovery area (though with great manners, according to the nurse there), and was returned to me to spend the next hour de-fogging, nibbling on crackers, and eating three popsicles in three different bright hues while Disney Junior played on the room’s TV high up in the corner.

She thought it was a perfectly lovely way to spend the morning.

As her mother, I found it to be a bit more work.  Thinking about our anesthesia options; watching for any signs of a bad reaction somewhere; talking to the dermatologist about the degree of zapping we should try this time (too little means little progress, but too intense will burn patches of skin permanently); verifying the semi-loose tooth myself to see how much the anesthesiologist should concern himself with it; wracking my brain for any recent fevers in our family of five, because heaven knows my mommy memory is so short that my toddler could’ve been puking yesterday and I would’ve forgotten.

It all went smoothly.

Annnnd, not gonna lie, any time spent with only one of my three children is basically two-thirds of the way to a day off…  So I, too, thought it was a perfectly lovely (and refreshingly quiet) way to spend the morning.


            

Decisions…

.Sleeping Addy PWS

After Addy was born, Keith and I had to decide whether or not to pursue treatment for her port wine stain.

It’s odd – you have this beautiful baby girl, and you know she’s absolutely perfect, but there’s something you have to “fix.”

We were 90% certain we would treat the stain… In hindsight, I realize the only reason it wasn’t 100% was because we felt that, by treating it, we were acknowledging that it was a blemish.  And we didn’t want her to see it as a blemish.

But over time, I learned something rather profound: you can both call the error and call it beautiful.  An the fact is, the port wine stain is an error, a mistake that occurred in development; trying to label it anything else deviates from the truth.  But that doesn’t mean it’s not beautiful.

And once you wake up to that truth, you realize how much of this beautiful world is so, not in spite of, but because of the errors.  It’s the deviations from “perfect” that we find interesting, lovely, attractive.  A towering, twisting oak tree gnarled by age and storm; the jagged edges of a rock cleft by violent wind and ancient water; those tiny little pigment mutations sprinkled on the nose that we affectionately call “freckles”.  The tree, the rock, the skin… all deviate from their error-free Platonic ideal, and yet all are more beautiful for those deviations.

So, we face the error honestly.  We zap the invasive blood vessels that have masked our daughter’s face from birth. And yet, every step of the way, we affirm not only her beauty in general, but the unique beauty of her face for the lovely error she she’s blessed to bear.

“In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they’re still beautiful.”

— Alice Walker

 

Addy sleeping

Baby Addy Port Wine Stain beauty

Addy and Daddy

Comfortable

And for posterity...

After Addy de-fogged from her last surgery, she wanted to see what her face looked like.  She knows that each laser treatment brings bruising – sometimes darker, sometimes lighter.  I didn’t have a mirror with me in the hospital room, so I grabbed my phone and flipped the camera on so it could act as a mirror.  She stared at herself for a minute, then observed the bruising with a matter-of-fact, “Well, that’s purple.”

And with that, she moved on to silly selfies.  I love her comfort level here, so I thought I’d share a few.  She’s post-op, she’s bruised, she’s aware of it, and she’s over it.  Her face will definitely garner some double takes when we leave, and that’s okay.

Yay!

Oooh-aaah

And that side...

This side...

The Best of Times, and the Worst of Times…

(That’s Addy trying to play it cool while telling me what she’s looking forward to at this surgery.  Before I pulled out my phone, she had been talking a million miles an hour, almost bouncing off the bed with enthusiasm.)

Addy had another laser surgery in January. She had looked forward to it for MONTHS. We try to do them every three months now that she’s older, but occasionally we have to push it back an extra month for scheduling conflicts, like this round. So with 4 months between surgeries here, she had an extra month to get excited about going into Children’s hospital.

“Mom! When do we go to the hospital?”
“Another 6 weeks, sweetie.”
“But I thought we were going sooooooner!”

“Mom! We go see Doctor Zelickson THIS MONTH!”

“Only 3 weeks until we go to Children’s!”

“I get to go see him in 2 weeks!”

“MOM! Only 1 week left!”

“GUESS WHAT!! Only 3 days until I see Doctor Zelickson!”

We came this close to making a paper chain like we do for countdowns to vacations.

This kid loves going to Children’s hospital for her laser surgeries. Her love of all things medical is the result of both some intentional parenting during her early procedures and the awesome folks at Children’s. (I’ll post more details about the parenting side later, in another post.)

Addy underwent her first laser surgery at 5 weeks old, and she’s had over 30 so far. She knows the faces of Doctor Zelickson, the nurses, the anesthesiologists, and the Child Life Specialists, and they all know her. She knows the routine by heart and looks forward to it each time.

Here’s the routine: We get to the hospital early in the morning and check in, where she chats up the receptionist. We wait in the waiting room for a few minutes until they call her name, then we follow them back to the pre-op ward. We stop in the hallway to check her weight and get her some hospital jammies. We settle into the pre-op room, she changes clothes and gets comfy on the hospital bed, and then the nurse starts the Q&A session (“Any loose teeth? Recent colds?”) while checking Addy’s blood pressure, etc. As an hour or so passes, we see a parade of people: the pre-op nurse, the pre-op nursing assistant, the Child Life Specialist (Geri, of whom you’ll see more later here), the nurse anesthetist, the anesthesiologist, and, of course, Dr. Zelickson. Everyone verifies what we’re doing (“laser surgery”) and where (“to the right side of the face”). Somewhere in that hour, either the nurse or Geri hooks Addy up with toys, even remembering from visit to visit which toys are Addy’s favorite (princesses, of course). Then, when it’s time for the procedure, they wheel her back to the Operating Room, and I give her a kiss while they drug her and then leave once she’s asleep so they can do the zapping. They wheel her back to the room within 20 minutes. (It’s a fast procedure.)

I should pause here to explain that in the past, we’ve had some trouble coming out of anesthesia. Addy was 3 or 4 when she experienced ‘emergent delerium’, which means that her body woke up before her brain. Anesthesia is steadily breathed out of the system, and if the body wakes up before it’s all out, the brain is still fogged, drugged, and weird. With Addy, this manifested first as weepiness, then quickly turned to an angry, inconsolable tantrum that lasted an hour. It was like being on the set of “The Exorcist.” It. Was. Miserable.

After that, I’ve always asked the anesthesia team to please keep her asleep as long as possible, to let her sleep off the drugs. At September’s surgery, they gave her Versed, which is a hilariously loopy drug that helped knock her out until her brain was de-fogged. Worked like a dream, and I got some very cute videos of a trippy Addy.

This time, we did the same thing. The nurse gave her Versed at 7:25a.m., and because Versed wipes out memory, he reminded me: “Her memory stopped at seven-fifteen.” Ok, cool, whatever.

Wrong.

When Versed wiped Addy’s memory, she lost the memory of seeing Dr. Zelickson, of being wheeled down to the O.R., and really, of most of the routine she had so intently looked forward to.

When she came out of anesthesia, she was confused and weepy and demanded that we do it all again! She cried because she didn’t believe us when we told her that we’d already done everything, and it was over now. “No, we haven’t! I haven’t seen Doctor Zelickson! You haven’t wheeled me down the hall yet! You need to wheel me down the hall!”

This is where Geri (the Child Life Specialist) comes in. As soon as the staff saw that Addy was distressed, Geri stepped up. Planted next to Addy’s bed, she calmly and clearly spoke to the confused little girl, firmly reiterating that yes, we’ve already done all of that, and then she reminded Addy of the yucky-tasting drug she took earlier, explained to her that it wipes out memory, asked Mommy to pull out the phone with which we’d taken a few pictures ahead of time (to show Addy evidence of the routine that did in fact take place), and explained to Addy in clear step-by-step terms that her big-girl brain doesn’t like being confused about sequence and routine, and that it’s okay to be a little stressed about it. She didn’t mince words, she held her ground when Addy insisted that we do it all again, she was kind, she was patient, she was empathetic, she was firm, she was clear, she was basically everything you’d want someone to be when they’re giving your kid a pep talk like this.

She helped catch Dr. Zelickson between procedures, so he could come back into Addy’s room and we could check that off Addy’s mental checklist (again). She even arranged for the two of us to wheel Addy’s bed down to an induction room (which looked like an O.R. but wasn’t in use) to fill in some of the routine ‘gaps’ in Addy’s brain. Check.

Can you see why I love going to a Children’s Hospital?  These people know their clientele.

When we were all done and Addy was ready to go, I took her down to the hospital cafeteria for a special breakfast, just the two of us. (A rare treat when you’re the eldest of 3 kids.) Her brain was de-fogged and she enjoyed herself.

All in all, I felt awful about wiping Addy’s memory of the experience that she had so wonderfully anticipated. She’s already counting down to the next one, and we’ve all agreed (me, Keith, Children’s staff, and especially Addy) that we’ll skip the Versed next time. Apparently, the risk of emergent delirium peaks around ages 3-4, so it’s less of a risk now anyway.

Each year of treating Addy’s port wine stain brings something different; we’ll see what Age 7 has in store for us.  (So far, it appears we’ll be dealing with a strange tear-drainage problem around the eye, but more on that later.)  Whatever it brings, I know that Addy’s in good hands at Children’s, and that we’ll figure it out together.

 

Having breakfast after Addy's latest laser treatment.

Having breakfast after Addy’s latest laser treatment.

Talking to Others

A dear reader (whose daughter has a similar stain) asked me the following question:

“…I do struggle with how to respond when people ask questions about her face, especially after a treatment. I want to educate them, but at the same time, I don’t want to be judged. I don’t think the average person understands how extensive these port wine stains become with age and without any treatment. Do you have any advice on how you respond to these types of questions?”

Why, certainly. 🙂

First, don’t worry; there will always be people who disapprove of your decisions. They can’t do anything about it, so let them stew.

Second: my rule of thumb is to always (always!) strive to make the other person feel comfortable. Not only is it kind, but in our cynical culture it’s also unexpected, and therefore disarming to any potential jerks. (In other words, if they’re expecting me to be defensive and I’m not, they soften up immediately. Works like magic in most of life, actually.)

So, kindness is key. But how do we make others comfortable when we’re toting a small child who looks like she’s been in a barfight? And in only a quick minute or two of passing conversation?

I’ve found myself using the following lines the most – they’re simple, they sum up the problem quickly, use imagery that people understand, and are casual & humorous enough to put people at ease. Sprinkle them into the conversations as you wish:

• “Oh, she’s fine, she just had another laser treatment for her port wine stain.”
• “It’s a proliferation of blood vessels – basically, they never got the signal to stop growing in utero, so they just keep growing, and growing, and growing.”
• “The laser zaps them – they heat up, explode and die. So then we can zap the next layer – there are a TON of them.”
• “It’s like weed-whacking – those vessels are constantly growing, we’re just beating them back. The sooner, the better.”
• “Yep, as she grows, the blood vessels keep growing with her. The whole thing will get thicker and darker and even nodular over time. It’s crazy!”
• “It’s not a big deal, we just have to keep weed-whacking for a while, that’s all.”
• “We’re going in for another zapping next week.”
• “I think it’s pretty much the same thing they do for varicose veins.”

The ‘weed-whacking’ analogy clicks with people – they suddenly ‘get it’ that this is a long-term process against constant growth, and it makes them smile. (Who hasn’t battled weeds in their yard?)

‘Zapping’ also sounds casual and surprisingly noninvasive, and makes people smile. (What kid hasn’t shuffled their stockingfeet on carpet and zapped a door handle?).

Pointing out the relation to cosmetic surgery seems to make people more comfortable that this is a simple, noninvasive procedure.

When you speak with easy confidence and a smile, rolling your eyes at how these blood vessels just keep growing (and growing, and growing), waving your hand when you tell them “Oh, she’s fine,” and shrugging when you tell them she’s going in for another zapping soon, they’ll usually relax. You’re cool with it, they can be cool with it, too.

When you’re with your close friends and confidants, you can relay your anxieties, fears, and worries – after all, this is your daughter and there’s a lot to worry about. But as long as you’re in casual conversation, just make people comfortable, and you’ll find that most respond with kindness.

First Kindergarten Surgery

Today Addy went to kindergarten sporting purple laser-surgery bruising for the first time!

As usual, the parents stressed more than the child. We had talked with her quite a bit leading up to this, and I’ll write a post soon to let you know what we covered and why.

In the meantime (we’re all pretty wiped out from the last few days here, so I’m going to bed ASAP), I can tell you that her classmates are cool, her teachers are awesome, we love her little school, and it totally works to tap into a girl’s inner diva.

More later. 🙂

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When We Thought About Treating Baby Addy’s Port Wine Stain…

When a parent ponders whether or not to treat their child’s port wine stain (or any other malformation), they face a conundrum: they’re making a decision *for* their child that will have a HUGE impact on that kid’s emotional development, self-image, self-esteem, and school experience… annnd there’s a slim chance that their child will eventually hate them for it.  (So, I guess it’s the same as most of our parenting decisions… Hm.)

A) If we treat this, then she won’t get made fun of as much in school – yay!  But then again, maybe someday she’ll hate us for taking away a distinguishing mark that was rightfully hers…?  B) If we leave it so that she alone can decide its fate when she’s older, then the damage will be done, both physical (as it may have grown too thick to treat completely) and emotional (as she will have already endured early childhood with immature classmates and the inevitable questions and teasings). 

So there we are, with the fate of our daughter’s face in our hands.  Obviously, we’ve decided to zap it off.  (And we don’t regret it.)  We’ll either get a sincere “Whew, thank you, Mom and Dad, for thoughtfully removing the mask so that people can see the true beauty of my face! I’m so glad I get to look like everyone else at prom!”  …Or, we’ll get a dramatic “I CAN’T beliEVE you took away the ONE THING that made me unique!  Now NO ONE will EVER notice me!” and then she’ll run upstairs and slam her bedroom door and blast whatever emo music the teenagers will be listening to at that point.

No pressure.

 

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