I talked to Dr. Su, Gracie's cardiologist, today to confirm that we are NOT going to do her surgery on November 5th. The goal right now is to push her out until January or even February if her saturation levels stay between 75-85. They are hoping that this extra time will allow the pressures in her heart to go down. Right now they are double than where they should be. I took her sat levels today and they were in the low 80's on room air which is good. We won't know if her pressures have changed until they do ANOTHER heart cath in probably January. If her pressures are still high at that point then it is not good news and they will have to discuss as a cardiology/surgery team what they would like to do for her.
She has been approved for the Synagis (RSV vaccination) shot and will start those at the beginning of November. She will get this shot once a month. Any guess as to what it costs? $1200-$1600 PER SHOT!!!!! Isn't that incredible? They have also advised our little family to get the flu shot. So I will be scheduling that in the next couple of days.
So, we will hopefully stay as healthy as possible for the next couple of months and enjoy the holiday season with our sweet girl. Thanks again to everybody for all of your concern and support!!
17 comments:
I'm so happy to hear that you get to relax and enjoy the holiday season... free from the hospital!
Just a tid bit in case you haven't heard.....they now have a "flu mist" given in the nose, so no shots for your kids! We too have to do it yearly b/c of our little HLHS guy and the other kids were so happy to not have shots this year!
You'll love the extra time with her before her surgery and the holidays will be extra fun for you. She is so adorable. Love you guys.
That is great that she is going to get the RSV shots! What a blessing.
If you are still with Dr Wilcox his flu shot clinic this Thursday. Just call and they can schedule a time for you to bring you kids in.
hugs & prayers,
Christina
Jacob's momma
Hang in there! Wonderful is the fact we live in this country, where Gracie has access to the absoulte best care in the world. A very sweet smiling bundle of joy. Enjoy this holiday season, and we will pray that the Gracie's pressure return to a normal range so she is able to have the surgery that she needs. Harry
Gracie just wanted me to go play golf in Mesquite on November 5th. What a good grand daughter she is.
Oh man! Thank goodness for insurance! Hopefully you all stay healthy and have a great holiday season! Love that baby girl...
Tami
Wow, that is ridiculous the expense! We will pray for all to go well that Gracie can hold off on surgery as long as possible! She has come such a long way.
Praying these will be months of healing and strengthening before her next surgery...and that peace will reside in your home and hearts as you wait. Treasuring every moment, I KNOW!!!
Praying these will be months of healing and strengthening before her next surgery...and that peace will reside in your home and hearts as you wait. Treasuring every moment, I KNOW!!!
I am glad you get to enjoy the holidays and then start to think about surgery again! Yikes - what is synagis made out of - gold? I wish I was lunching with you on Monday. Let's figure out another time!
Love, Natalie
I echo what someone else said in wishing you all health during this holiday season so you can truly cherish each moment with each other. We will miss you guys at the Halloween party! Give Gracie big kisses for our family!
That is so wonderful that she will get to grow and wiat a little longer. Looking at her in her dads arm you realize just how little she is. She just gets more adorable with each day.
Wow!! So much has happened since I last checked! I was out of town for a while. Glad I checked in and I am glad she is doing better. What a happy girl she is in that pic. Thanks so much for the updates! I know I am not the only one that checks for updates on how she is doing so thanks!
I hope her levels go down by then. ...and yes keep your family as healthy as you can. We drink "Immune Fizz" in the wintertime. Find out if your insurance covers the flu mist. That's what Talmage got and then I got a big bill saying that insurance didn't cover the mist! What a drag.
On another note. Lachlan spent the weekend up at Primary's (he's fine now). I know my experience there is nothing like yours but I kept thinking about you while I was there. I loved the staff! They were so wonderful and you KNOW that they love your child and they want the best for them.
Oh, we are all glad that you keep this updated and you are glad because then we don't have to bug you! I am glad you can at least enjoy the holidays with all of you at home! That will be wonderful! Love ya and pray always for all of you!
Annette
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