Blog Archives

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:

IMG_4259

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. 🙂

20131119-205304.jpg

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.

 

Image

Variations: Not all port wine stains are the same…

Okay, so now that we know that a port wine stain is, for lack of simpler words, a ‘proliferation’ of blood vessels along a nerve, I can tell you that recent research (which you’ll stumble across if you Google ‘port wine stain’) has determined that it is not hereditary.

The problem is simply a mutation that happens somewhere along the way as the fetus is developing. If it happens early (and therefore multiplies itself as the fetus grows), then you end up with a bigger, deeper, port wine stain. If it happens later in development, then you see a smaller, lighter port wine stain.

We’ve met people with varied port wine stains, from a little light-colored “Whatdidya spill there?” spot on a cheek, to Addy’s “Woah! What is On That Baby’s Face?” mask, to a half-bodied “Is that a purple tattoo?” job.

Again (and this is really important), these are not hemangiomas, they are not strawberries, and they will not go away on their own. But they are often all lumped together, since they are all ‘vascular malformations.’

Oddly enough (for a problem that’s not genetic), my third child Eloise was born with another “vascular malformation” – in this case, a hemangioma on her tushy. How do we know it’s a hemangioma, and not a port wine stain? Because that bright-pink little splotch is raised & bumpy; a port wine stain is dark and flat (to begin with). So, we can be reasonably assured that this pink little splotch, unlike a port wine stain, will eventually fade away as she grows.

In any case, I don’t care how long it takes that hemangioma to fade. It’s on your butt, sweetheart; I’m not paying to get that sucker to get lasered off.

*More* Treatment Tips…

Sorry to disappear for a bit here, I’ve been on vacation!

It looks like I completely forgot to keep going after Treatment Tip #1 in the last post. Here are a few more tips (and again, some of these apply to any medical procedure):

– Mom (and/or Dad): Be prepared to cry. Putting your precious offspring in someone else’s hands for medical care will go against EVERY GRAIN OF PARENTAL INSTINCT in your soul. It’s okay. We’ve all been there. Choke up. It’s cool.

– Ask a nurse for an anesthesia mask so your kid can play with it ahead of time. Put it on your own face, too, so your child sees you at ease around it. (Children’s Hospital gave us an extra one for Addy to take home. I’ve had that thing plastered on my face MANY times as she played “doctor” with me.) Also ask them if your kid can put some yummy-smelling-stuff on the mask; Addy’s favorite flavor is “pink”, and they let her swipe the mask with some bubble-gum-flavored lip balm before going under. These actions give the kid more control and less anxiety over the whole process.

– If your kid goes under anesthesia for any reason, remember that it can take 3-5 days for a person (child or adult) to shake the effects of anesthesia. Basically, expect them to act emotional for up to a week. Weepy? Yep. Volatile? Yep. It’s like they’re teething or having a growth spurt, and it’s totally normal, even for grown-ups. Give them some grace, they’ll be back to normal soon. (Warn caregivers.)

– Also with anesthesia: it’s possible for their body to wake up before their brain. In other words, your kid looks awake, but their brain is still working off the anesthesia. I’ve seen Addy freak out when she woke up too early. (She was like the girl from the exorcist, totally weird, not my kid.) So now I ask them to MAKE SURE that she SLEEPS it off. I don’t care if it takes two extra hours; keep that kid asleep until her brain is de-fogged. Feel free to ask your anesthesiologist about it, or leave me a comment if you want to ask me for more info first.

– If your kid’s port wine stain reacts with eczema after a treatment, try Aquaphor. We’ve used Vaseline and bacitracin, and have settled on the awesome Aquaphor. It’s related to Vaseline, but is magically better. Don’t know why. Worth a shot. (And FABulous on your lips, mama. Feels soooo good!)

– Lip balm w/ sunscreen: When Addy was a squirmy baby, we used a sunscreened lip balm on her face to kill two birds with one stone: a single quick swipe provided 1) moisture (take that, eczema!) and 2) sunscreen (especially important for port wine stains). We used Shaklee’s Enfuselle SPF 15 lip balm, because we love it (so much so that we sell the stuff), and it doesn’t cause a reaction. Find whatever works for your kid’s skin. It saves you from having to apply sunscreen lotion with your fingers on your squirmy baby’s face, or worse, spraying one of those sunscreen sprays by her eyes. Very convenient while they’re small.

Even little things like laser treatments can cause parents stress. I hope these might help you if you’re bringing your little one into the hospital. And, as always, feel free to leave me any questions or comments here if you want further insights. 🙂

%d bloggers like this: