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.)
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:
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!”
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.
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:
Posted on November 30, 2015, in 3. Addy Stories & Experiences and tagged Treatments. Bookmark the permalink. 5 Comments.
Hi there! I came across your blog as I was researching pulse dye laser and I just want to say that you are doing a terrific job of parenting and this blog has brought such joy to my heart! I am 22 years old with a Port Wine Stain on the left side of my face (nose to temple and from eyebrow to lip). I had a number of laser treatments until the age of 6 years old because my parents at that point told me I wouldn’t have to get another one unless I wanted to. I recently decided to resume my treatments because as you said the weeds continue to grow as I grow. I know full well that I won’t clear the stain 100%, but I am hoping to both keep it at bay as I get older and to lighten it as the stain did get significantly darker during puberty and through sun exposure. My doctor says that when we are done, I will be able to cover the PWS with a light layer of makeup and that sounds great to me! I am currently recovering from treatment 1 out of what I hope to be only 6 (1 every 2 months for a year) and boy is the bruising something else. In retrospect, I wish they had continued to make me get the laser until I was in middle school, even if it was once a year in the summer, because it is so much easier to get the laser when you are younger.
I also wish my parents had done a better job of making my Port Wine Stain an “open topic” as you speak of. I think they were so focused on not “making it an issue” that I internalized my PWS as something my family didn’t talk about and became ashamed of it as a result. Taking the initiative to resume my laser treatments was very difficult, but has inadvertently been very healing for me as it has forced me to acknowledge my PWS and talk about it openly with family members and friends, who have all been extremely supportive. However getting PDL later in life is difficult because I now have to worry about missing work due to the very intense bruising.
In general, I am still in the process of fully embracing my PWS. I wear makeup everyday to cover it when leaving the house, but I am slowly sharing my PWS with more and more people around me everyday, and hope to feel confident enough to go out without makeup soon. For me, makeup came about during middle school when I began to perceive that boys would only like me if I had makeup on. Once I wore makeup, I had no trouble attracting boys and began to think that once I took it off that would all go away along with my popularity and social status. This followed me all through high school and college. I had an awful bullying experience in 5th grade that was more or less isolated in its severity, but that was enough to make me believe that my birthmark was ugly and I still internalize that experience today.
Today, makeup allows me to go about my day easier since I can avoid stares from people and it has allowed me to be seen for more than just the PWS, however it can be a spiral in which the more often you wear makeup, the harder it can be to “ween” off of it, especially when your birthmark becomes a secret from others. That secret then becomes very isolating as you feel that people don’t know the real you and fear they wouldn’t accept the real you. I’m slowly coming to learn that all of this is false. The fact is, we tend to make the PWS a much bigger deal in our own heads than other people end up perceiving it. I have had two long term serious relationships now where my partner knew about my PWS and it has never been an issue – not even remotely. The only issue related to the PWS in my relationships has been my own lack of self-esteem and the resulting insecurities, jealousy, and other things that can poison a relationship. I’m slowly coming to embrace and own my own beauty with this birthmark, taking on more of attitude that this is me, I am unique and I am brave, and if you don’t like it, then whatever.
Like all closets, I know that coming out of this one will allow me to be a much happier person, but baby steps 🙂 Anyways, I don’t mean to scare you, I only hope my experience sheds some light onto yours. Keep doing what you are doing with Addie and I think she will naturally embrace her PWS as opposed to playing catch up like I and so many others of us now have to do.
Thank you so much for your note!! I loved hearing your story – in fact, before I do anything else here, might I possibly have your permission to share your story (by which I mean throw quotations around your words and simply leave them as they’re wonderfully written, without messing at all with them) on my blog’s main page? I’d love for others to read what you’ve said, and would like to put it up as a new standalone post. (And if you want to say no and simply keep your words quietly over here, that’s totally fine – I know not everyone’s comfortable being openly quoted in this strange internet world.)
Thank you for your encouragement and your words of wisdom! How many treatments did you have in your first six years of life? Were they done fully awake or under anesthesia? I’ve seen a laser treatment done sans anesthesia on my son’s cheek, where a tiny hemangioma was unwelcomely growing — and he was stressed out! So was I, with all the BZZZ-BZZZZ-BZZZZZ going on, zapping that tiny spot. I can’t imagine doing that on the sheer acreage of a port wine stain! But I know some people have gone through that. We’re lucky that all of Addy’s have been done while she’s been knocked out; it helps her have positive experiences!
You have great wisdom in seeing the effect of not talking openly about your PWS in childhood, which made you internalize it, while at the same time showing grace for your parents and their choices. I remember marveling at the incredibly fine line between 1) talking so little that it becomes taboo, and 2) talking so much that we Invent An Issue where there otherwise might not have been one. The pressure! Your words encourage me that it can be helpful to err on the side of talking about it. :). Thank you for that!!
You’re perceptive to recognize the spiral of makeup. Not having a facial mark myself, I can only imagine that I’d welcome the ease of covering up a PWS with makeup to make my day go a bit smoother… And then come to rely on it as part of my identity. A spiral, indeed. You’ve given me excellent insight into how I can help Addy navigate that realm, if she finds herself wondering whether to cover or not. I had never thought of it in such clear terms before.
Yeesh, I can’t imagine the effect that an intense bullying experience would have. That’s something that would stay with you for years. We were just talking to our neighbor last night about her experiences growing up with one arm half the length of the other, and the various reactions (some nice, some neutral, a few bullying) she got from other kids. (A couple of those that tried the bullying thing most intensely got to experience the strength of her fully functioning arm…)
At the end of the day, isn’t it funny how we tend to make things bigger in our own heads? My mom tried to tell me that multiple times in junior high when I’d start freaking out about an article of clothing or a hairdo that wasn’t Just Right. Most people either a) already see and love us as we are, self-closeted though we may be, or b) truly don’t care enough to flinch when we do step bravely out, consumed as they are by their own issues. Such apathy is a blessing, if we can remember that it works in our favor.
Thank you again for your encouragement and wisdom!
I’m so glad that I found your blog! My son was born with a port wine stain on his face as well! He has had 13 laser surgeries since he was 6 months old (he’s now 4years old). He goes back in June for his 14th treatment. This journey has taught me so much over the years. I completely agree with you about being thankful that it is only a port wine stain and we don’t have to worry about death or sickness. I thank God everyday for our healthy baby boy!!
I’m glad you found us here, too! And I’m glad your boy is healthy!! It is quite an unexpectedly lovely journey, isn’t it? All the things for a parent to consider, all the emotional implications and medical considerations, and an overarching gratefulness through it all… I feel lucky to get to guide Addy along it. Please visit here any time; I love finding other PWS parents!
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