Convenience (Blog entry #8)

After four phone calls and an email, 1 week later,  we finally got the results.   Our Cardiologist said that she recommends surgery within the year.  “Whenever it is convenient for us”.    She feels it is best to do the surgery when he is healthy & strong.  She feels like anytime this year is the right time to do it.   She said she doesn’t recommend surgery lightly and for Parker to have a good quality of life this is our option.   It’s so hard to make a decision like this.  Open-heart surgery for my baby who doesn’t seem like he even needs it.  He seems so healthy.   It’s hard to pick the right time to risk his life.  When is the right time to do major surgery?  It’s very overwhelming and part of me wants to put it off and not think about it for a year and part of me wants to just hurry up and get it over with and move on.  We have so many decisions.  Which hospital?  LA? SD? Who do we feel most comfortable with?  Where is our baby going to be in the best hands? Where will we stay?  Where will Preston feel the most comfortable and not alone or confused?  It’s a lot of pressure for us.  There is a lot riding on our decision.

On the Williams Syndrome page I follow, I see some kids that have been Moderate or severe and have gotten better!  Or never got the surgery and are fine.  So of course I wonder why do they get better?   Is there a chance that Parker could too?   Is there a chance that we could do the surgery unnecessarily?   Could he outgrow this?  It all seems like such a guessing game.  At some point you have to trust the doctors.  Our Cardiologist says that where Parker’s valve is narrowing, is more risky and his quality of life would be compromised.  We, of course, don’t want that.  We want him to be able to run with the other kids.  Play soccer with his brother and not be limited in his life.  We want him to be able to do anything he wants and not be held back because his heart.  So, I guess our next step is to meet the team and top surgeons at both hospitals and then come up with a game plan. But I am thinking this summer.

Summer 2015.

5 Comments

  1. I believe in you and as parents you will know when the time is right and what the right thing is to do. The Motherly instinct is undeniable. Much love and prayers.

  2. Sarah –
    This is such a beautiful blog and writing. We love Parker unconditionally and think he is just the perfect little ball of love and light. We will be with you, as you make these difficult decisions. Xo.

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