Aug 20, 2010

I Am Tired

Do you ever feel emotions that you can't make sense of? Sadness. Defeat. Resignation. Discontent. Ill-At-Ease. Confusion. Fatigue. All of these at the same time. Having a child that is "unique" is hard. I just want to know what is best for her. I'm tired of hearing "Ainsley is teaching us about herself."  (Which I've learned BTW is simply doctor speak for "I Don't Have A Clue"). Every time I think I have come to a place of acceptance I am reminded that it is not 100% so. My inner thoughts frequently lead me searching on the internet with a new idea that might be "it."  IT is never IT. Ever.

My newest IT was Dr. Kami Parsa a surgeon in California that I hoped would be able to "fix" Ainsley's eyes or at least tell us what to do. We had a Skype appointment with him this morning. I laughed when they apologized for being 5 minutes late. If only they knew how many hours I've sat in waiting rooms, actually added together it would be days.  I was amazed when he offered this service of an appointment using web cams over the internet. A real doctor is doing this???! I nervously anticipated the appointment but it turned out that when he called he could see us, but his camera was "broken".

Still I recognized his voice from his many videos on YouTube. I figured any surgeon who would perform ptosis surgery and post a video of it on YouTube is extremely confident in his skills. He also comes across as a very caring physician. I liked his website and was especially impressed with his before and after surgical pictures. There were videos of him on the news, CNN, ABC, NBC etc. When I contacted Ainsley's plastic surgeon (who happens to be Chief of Plastic Surgery) he could not recommend Dr. Parsa because he doesn't know him or his work. Still, I felt good enough about this man's credentials to trust his opinion. Over the past month or so I've been in contact with his office.  Although I admit I found it a little bit odd that his assistant was named Marie Antoinette. This is LA so I just decided to ignore that although I did almost delete her e-mails thinking they were spam.

He'd seen all the before and after pictures (before she opened her eyes at birth, before the forehead reconstruction at 9mo age when the ptosis wasn't as bad, pictures of the swelling immediately afterward when she couldn't open her eyes, then at 1 and 3 months post-surgery when it became clear that her ptosis was quite a bit worse, as well as before and after the eyebrow prosthetics in January of this year). He requested additional photos of her eyes in different positions, looking up, down, left and right. We had a ton of fun getting those, using tape so he could actually see the eyeballs and not just the lids.

Not really fun, nope. This type of stuff is the "behind the scenes work" that goes with having a medically complex kid. Part of me hoped he'd tell us to hop on a plane next week. Of course he didn't. He surprised us by saying that though he could perform surgery on Ainsley if we chose, that she would require a lot of follow-up care and it was his opinion that it would make the most sense for her to see a local oculoplastic surgeon (the type of surgeon he is). This isn't the first time we've been told by a specialist that due to the complexity of our daughter's care we would be best off treated locally. He couldn't say exactly what surgeries he would perform unless he examined her in person. I'd hoped for more but that made sense and I wasn't really surprised.

What he did say that is most discouraging considering that he appeared to be a cutting-edge type surgeon is that he would NOT do the tarsal switch procedure that was suggested by the surgeon we'd been planning on using. His feeling is that it is an outdated procedure and there are better ways of doing the same thing.  And I almost forgot to add that he said perhaps surgery should not be done at all if it's not affecting her vision, (which it seems not to be though I do have another vision check scheduled for December to be sure). It turns out the other surgeon is an oculoplastic surgeon after all, and he was recommended by both her local opthalmologist and plastic surgeon, both are Chief of their department at Children's Hospital.  Her opthalmologist said HE wouldn't consider removing part of the tarsus but would okay the other surgeon to do so if he really wanted to. (Although it took a long conversation to get him to say that. But then he's a self-admitted conservative and wouldn't even do Lasik eye surgery.)

Where does this leave us? Confused. With doctors of varying opinions and no real idea what to do. We'd been planning to have this surgery done in September.  The hope was that we could be done with surgeries this year since all surgeries need to be done before we take any steps toward removing her trach. Now do we try to find a new oculoplastic surgeon without a recommendation out of the directory in order to get a 4th opinion?

The eyes are extremely important and delicate. We read a lot about people through their eyes. You don't want to make the wrong decision. I truly believe that people, including doctors, treat her differently because they can't connect as easily to her eyes. Yes she can see, and we are grateful for that. But we want more. We want our daughter to be able to fully interact with people. We want them to be comfortable looking into her eyes. We want her to be seen.

**The benefit that comes with having a medically complex kid is that you toughen up with time. Maybe that's good, maybe not. But it's how we (or I) survive. Unlike in the first years following Ainsley's birth I now bounce back quicker. Yes I'm still confused about what to do next. But a day later I'm feeling much better, I e-mailed Dr. Parsa again with a couple questions and we will be thinking things over as well as seeing Ainsley's plastic surgeon in September. Hopefully the right surgery and path will become clear. If you pray, pray for that. Since the doctors don't agree we need some additional guidance from somewhere.

*** I think I might have said this in a prior post in the past but should probably have said it again. The surgeon does not have any photos of the tarsal switch procedure. (This was perhaps the red flag that prompted my internet searching when I asked to see before and after photos and he had none and I could barely find any on the internet.) None of the surgeon's have kids' pictures available for viewing because of privacy issues for minors (normally they block out the eyes but you can't do that with eye surgery pics), so pretty much you have to base the decision on their surgical skill on adults with different (perhaps somewhat similar) conditions and what sounds like a logical approach. Because Ainsley is unique there are presumably no other cases "like hers" (Few kids have had their foreheads rebuilt , and happen to also have congenital ptosis and need work on the lower lids.) but it would be helpful to be able to see the surgeon's pediatric work. 


  1. Wow, I have never heard of a consult via Skype. That in itself is cutting edge stuff. Sorry for the conflicting information...I so know how you feel. **FRUSTRATED**

  2. I hear you Susan. Sometimes it would just be nice to get an answer and a "fix". It would be nice if there was just one way to do something and it worked every time. Why does everything always have to be so complicated? I think if this journey with our kids has taught us anything, it's that doctors really don't know all that much. We can make just as good an educated guess as they can. Sending you prayers and good luck as you navigate your way through the surgery options for Ainsley's eyes.

  3. So Susan first I will tell you how much I just love you. I think you handle everything so beautifully. You are wise in your research, and your assisting others when dealing with their medical issues also.
    I just have a wee problem, I only wished I lived nearer, I would love to discuss in person over a steaming hot coffee but alas it isn't that way so I will do this here.

    The first idea that came to my head was this.
    Surgeon 1. and 2. Would they be able to show you portfolios of patients
    they have performed surgeries on. Would you be able to see if there was (and I know no 2 cases are the same) one similar to Ainsley and then perhaps give your contact information to them so that family could contact you? Also if the surgery was performed several years ago how does the patient look now?
    Then you could get their own personal input onto what they thought of their decision? The results? Pros? Cons? Would they do it again? Would they have gone a different route?
    Just tossing that out there.

    I think you are doing exactly what you should be doing, leaving no stone unturned.

    Ainsley is beautiful, her eyes soulful and I just love her.

    All the love in the universe from me to you!

  4. I'm so with you on so many points. I will second what Ann said - that doctors don't really know that much. I feel like I lost a lot of "innocence" in that regard when Harlie came along. Most people think docs know everything.

    I think what makes this ptosis situation so annoying is that you're not getting confident answers - meaning they don't know if their surgery choices would work - so how they heck are you supposed to pick the right one?!

    But, somehow you will make the right decision. It's just getting there and staying confident in that decision that's so tough. And it's not like it's the only tough decision you've ever made when it comes to her. Really, I truly think I understand how you feel in so many ways. And I'm sorry that you have to feel those things and make these decisions. And that Ainsley has to have these challenges.

    Big hugs, Susan. Know that you two are always in my thoughts!!!

    Much love,

  5. Hey Susan I think the twins and Ainsley are the same age by a day or something. Twins are October 19th 2006, and what about Ainsley?

    Tag's outfit is that gosh darn Matilda Jane.....their clothing makes me just weepy over the cuteness of it all. I hit their 65% off sale and LOVED the prices.

    I am over the moon over your news.