October 29th.

Lately I have been stumped, not really sure what to write.  Now that Parker’s heart surgery is over what can I write about that’s actually interesting?   I definitely don’t want to write a blog that is boring.  And because I write with so much emotion and things have been so great I have been almost at a loss for words.   A few times I have started to write but stopped because it just didn’t seem interesting. But today I have finally been inspired for more reasons then just one.

Since my last post, Parker has been doing great.  He turned two and has really started to show his personality.  He is a sweet as can be but he will definitely show you when he’s not happy. Or, if he is not happy with his brother, he will hit his head on the ground or will just hit his big brother.   He’s really just trying to survive in a house with an older brother who rips just about everything out of his little hands.   (We are working on sharing).

 

Since my last post we have been dealing with Parker’s eyes.  We noticed about a year ago that his eye was sometimes lazy. So I immediately took him to the eye doctor at Rady’s and he didn’t seem concerned and told me to come back in six months.   Since then I got a second opinion and the new doctor said that we had two options, Glasses or eye surgery.  Well, being that we had just gotten out of open-heart surgery less then three weeks before that appointment, surgery was the last thing I could even comprehend.  So Parker got glasses.   $300.00 on a pair of little toddler glasses.  Can you believe that?  But they were so cute and so worth every penny if that meant that it would correct his lazy eye.   One day, I tried to look through the glasses and they were so strong It was hard to imagine that his little eyes were that bad!   I decided to bring him back in to make sure the prescription was correct and after just three weeks and spending $300 on new glasses the doctor said that they didn’t work and he would need eye surgery.  BLAH.  It’s a very routine surgery but he would be under for anesthesia for an hour and..  blah-blah-blah…Deep breath.  And what really sucks is that we just hit our out of pocket maximum for the year with Parker so from this point on for the rest of the year everything is supposed to be covered at 100% because his heart surgery was so expensive.  But, Tucker’s Company is changing insurance starting Nov 1 and the surgery is going to cost $10,000 and… it never ends….

Parker with his new glasses
Parker with his new glasses

As you all know we live in San Diego and when Parker was younger we had multiple sedated ECHO’s. Then one day I was inspired by a mom who had just lost her little boy at Rady’s Hospital.  He had Williams Syndrome and had a terrible heart and they went in for a routine procedure under anesthesia and he died.   So I decided to get a second opinion and went to CHLA and discovered that you could do an echo without sedation and that immediately changed our lives. From that point on, we decided to do everything for Parker at CHLA because we felt that they understood Williams Syndrome more then Rady’s San Diego and they understood the risks involved with Anesthesia and Williams kids.   I remember calling our Cardiologist at Rady’s San Diego and getting into it with him because I was so pissed that they unnecessarily put my child’s life at risk multiple times.  And they insisted that you couldn’t get a good echo on a child without sedation.

Fast-forward to post operation for Parker, We decided to try and do all follow-ups in San Diego because it’s so much easier and more convenient for us to not drive to LA.   We met our new cardiologist and they scheduled a follow up Echo for Parker but sedated.  I was so upset.  I didn’t want to put him at risk again and I was so frustrated.  There is a point you become tired of arguing with the doctors.  I started to second-guess myself. But, I went with my gut.   I canceled our appointment and decided to drive up to LA and do a non-sedated echo because apparently LA is the only place that can do it.  SO this gets confusing so try and follow… We have our appointment scheduled for December in LA and I got a random call from Rady’s to schedule our non-sedated echo? So I called them and she said “Your son has Williams Syndrome right?” and I said “yes”.  She said “ we don’t do sedated echo’s on Williams kids anymore”.   WHAT?!!!!!!!!!   Are you kidding me?!   I could not believe it!   They changed their protocol!   After a little boy passing away, after me fighting with them and constantly changing appointments they have finally changed their protocol.  I actually have no idea why they decided to change it and I am 100% sure it has nothing to do with me but I cant help but feel proud of myself for standing by my little man and second guessing everything that doctor said about Sedation.  I feel proud because I was right and they’re finally opening their eyes and changing their protocol.  And although that poor mom who lost her little boy a couple years ago will never get over that pain. She changed my life by sharing her story with me and because of her I started to question doctors and question the use of anesthesia.   I will be forever grateful.   So we have our 1st non-sedated Echo this coming Tuesday in San Diego.  Please pray that the results are great because if they are then we don’t have to go back for another six months!

Today-October 29th 2015.

Today we are 3 months post-op for Parker’s open-heart surgery.

Today also marks our D-Day.  Two years ago we got Parkers diagnosis.  2 years ago today was the worst day of our lives.  That day we endured so much pain and loss.  Loss of the child we had dreamed of.  Loss of the little brother we imagined for Preston.  Scared for a hard life.  Scared of this new world we had just been thrown into.  And although time heals all wounds, and we are so in love and happy with our little boy, we will never forget that day.  We will never forget those feelings.  The day that changed our lives forever.  Diagnosis Day Oct. 29th 2013.

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2 days after Parker’s Diagnosis Halloween 2013. We thought our lives were over. We put a happy face on for Preston.

7 Comments

  1. Good for you, Sarah, for fighting for what’s best for Parker!! I’m sure it’s exhausting, but don’t be afraid to get second, third and fourth opinions. Mommy always knows what’s best! Hope you all enjoy Halloween year. Thinking about you all often. Xoxox

  2. Thank you for sharing ! This is why I feel the medical waiver is so important, crazy that you must start all over. I think about that other little boy every time I home via his neighborhood, so happy that Rady has finally changed the sedation protocol !

  3. Sarah, I love reading your blogs 🙂 Little Parker has touched all of our lives and I enjoy you sharing his and your victories! Love to you and your family, xoxo

  4. Every time I read one of your Posts I either get the chills or cry, sometimes both. This time I got the chills but a huge smile. Huge smile because it’s a good reminder that our intuition is always right and never a thing to ignore. I’m proud of you for always doing what YOU thought was best for your baby not what others told you was best. And a smile most of all because Parker is here for Halloween tonight. God is good. 💕

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