Emily was born with complex congenital heart defects. She was born without the valve between her pulmonary artery and her right ventricle. She had a hole between both her atriums and her ventricles and her pulmonary arteries were WAY too small when she was born. She has a very extreme case of a defect called Tetralogy of Fallot.
We were able to get the majority if these issues repaired during her previous open heart surgeries. Her last one (almost 8 years ago) she suffered a stroke that left her paralyzed on the left side. This was due to a lack of blood flow and therefore oxygen to her brain going off the cardiac bypass machine. She made amazing progress and fully recovered from her stroke.
In November she began having some chest pain and dizziness. We went in at that point for a cardiac catherization and found that her pulmonary valve was leaking tremendously and causing a lot of work for her ventricle.
On Thursday they will once again put her on the bypass machine, remove the old valve and put in a new valve that will ideally last appx 15 years or so. Yay!!!! This new valve is also able to be replaced via a cardiac cath rather than yet another open heart surgery which is fantastic news and a whole lot less dangerous.
Emily has undergone 5 open heart surgeries and 13 cardiac caths with angioplasty.
We head down to Riley on Wednesday for a long day of preoperative testing to make sure all is well.
On Thursday morning she will be taken back for surgery, I won't know the time until Wednesday, but likely it will be early.
Because of the number of surgeries Emily has had and the intricacy if the procedure it will be a very long day for us all. The surgery should last somewhere between 12-14 hours :(
When she gets out of surgery we will spend a couple of days in the ICU and then she will be moved to the Riley Heart Center until we are ready to go home.
Ideally we will only be hospitalized for 5 days, but she will have another 3 weeks at home because she will be much more succeptible to germs with the forgien valve
Thank you all so much for your prayers, your concern and for following along on her journey!
Dear Emily,
ReplyDeleteYour presence is a gift to the world,
You're unique and one of a kind.
Your life can be what you want it to be-
Take it one day at a time.
Count your blessings, not your troubles,
And you'll make it through what comes along.
Within you are so many answers,
Understand, have courage, be strong.
Don't put limits on yourself,
Your dreams are waiting to be realised.
Don't leave your important decisions to chance-
Reach for your peak, your goal, your prize.
Nothing wastes more energy than worrying-
The longer a problem is carried, the heavier it gets.
Don't take things too seriously-
Live a life of serenity, not a life of regrets.
Remember that a little love goes a long way-
Remember that a lot goes forever.
Remember that friendship is a wise investment,
Life's treasures are people...together.
Have health and hope and happiness,
Take the time to wish on a star.
And don't ever forget for even a day...
How very special YOU are!
Love from the Sims Family
Frank, Sheryl, Katie and Zach
Sheryl, you made me cry!!! How sweet this is!!!!
ReplyDeleteAmy, this is the same poem in her letter. I thought she would like some inspiration before her surgery when she may be feeling a little scared or nervous. It was so nice to meet you last night and I wish I wasn't in the middle of typing a report when you were there, I should have taken the time to get the laptop off my lap and give you a hug. I admire you for your strength and courage and just know that prayers will be answered and Emily will bounce right back and amaze everyone!
ReplyDelete