Next Surgery

Is it just me or do some doctors have no bed side manner? Being a parent is already the hardest job in the entire world. When you are the parent to a child with a special need, your job is even scarier. This past week we had one of those bad experiences.

For about a week, Olivia’s eye was getting really red on the outside and we couldn’t figure out why. We would take the contact lens out and let her eye rest over night or even for the entire day but it didn’t seem to help. The oddest part was that the eye itself was clear but around her eye would get beat red, tears would run down her face and she wouldn’t be able to open it! Her poor little Nemo! Of course, when I would try to patch her under these circumstances she would be so upset, ripping at her patch and crying until she could get her good eye out into the light. After a couple days, we decided to take her in to see our contact lens doctor to have it checked out.

I went to this appointment with no anxiety what so ever. Now when we go to the retina surgeon or the cataract surgeon, I ALWAYS walk in prepared for the worst. But not this doctor. We always get pretty good news and Olivia is the model patient.

As expected, Olivia let the doctor check out her nemo with ease. Her eye was healthy and looked great – amazing news! But when the doctor looked at the contact lens, she said it was absolutely out of commission. Being first time parents dealing with this sort of situation we had no idea what to look for in her contact but for any parents out there reading this – if the contact lens starts to look cloudy or like it isn’t getting completely clear when you soak it over night, it might be time to get a new one. We were never told what to look for so we didn’t rush to get a new one when we noticed a few differences. The lens should have lasted up to a year but for some reason, Olivia’s lens only lasted for the six months. So we discarded of the old and ordered a new one!

What happened next was what through me in a tailspin. The doctor was very upset that we hadn’t put Olivia through Strabismus surgery yet. I explained to her that our doctors thought it was best to continue patching Olivia and get her eye to a nice stable place before attempting the strabismus surgery. She then told me that by waiting to have the surgery, we caused Olivia irreversible damage to her eye – that by keeping it regularly turned out like it is, her eye was training itself to stay turned out. This news was devastating. We have been putting our little girl through patching every day. We pushed through the tears, the ‘mommas’ and the constant ripping at the stickers in hopes that one day, Olivia will gain more vision and be able to see through that Nemo eye. To hear a doctor say that despite our best efforts, by not having this surgery, we did irreversible damage to our daughter was heart wrenching. I left that appointment in tears – angry at a doctor with no bed side manner, scared that she was right. Terrified that I hurt my daughter’s chances in some way.

The next day, we headed to our other doctor regarding this surgery. The surgery is something I knew we needed to do eventually, but was it too late? We were quickly reassured that there is absolutely no irreversible damage that was done to Olivia’s Nemo. That this was a ridiculous comment to make. Olivia’s brain is so plastic and is always growing and changing. By patching, we are doing everything that we can to make Olivia’s vision get stronger and stronger. The strabismus surgery is only going to help her and make it even easier for light to enter her eye. So we did decide to go along with the surgery but these two appointments regarding the same issue could not have been more different. We scheduled her surgery for the end of November with a reassured mind and hopeful heart.

I write this post because I want to encourage others to not allow doctors – or anyone – discourage you. You know what’s best for your child. You have been by their side since day one. You have listened to everything that every doctor has said and you made the best choice for your child. One opinion from one doctor is not the end of the world and they may not always be right. In our case, she was right about needing the surgery; she was not right to fill my head with fear and unsubstantiated claims that were not relevant to my daughter. She didn’t know enough about her rare condition and that was reflected in how she spoke to me. But that’s okay. Hopefully our case will help other little warriors like ours and empower their parents to stay strong.

Olivia is scheduled for her next surgery after Thanksgiving.

Published by Danielle

My name is Danielle. I am a new mom, speech language pathology student and love all things Disney. I have a beautiful daughter named Olivia who was born with a condition known as PFV. This blog is a way for our to share our experience and what we have learned about the world, through the perspective of our gorgeous baby girl. Always remember, just keep swimming.

One thought on “Next Surgery

  1. I love reading this, something that is actually related to my daughters condition. Whenever i google her symtoms alot of worse senerios comes up which scares and looses my hopes. But finding and reading about others experiens with same conditon as my daughters eye who is only 8 month old gives me some kind of relief. Thank you!


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