Our Gracie Girl and her daddy, pre-op, waiting for her cath We came in this morning for Gracie's heart catheterization at 8:00. They took all her vitals and we changed her in her hospital jammies. She pulled her feeding tube out on our drive up so to calm her down before the procedure they gave her some Versed (through a shot up her nose)and Calo-something under her tongue. She was a little glassy eyed when we passed her off. This made it a lot easier than passing her off crying or whining for me.
The cardiologist Dr. Cowley, paged us at about 11:30 and told us that her pressures were too high. The connection of her SANO tube from her right ventricle is tight and through the x-rays it was showing little blood passing through it, almost looking like it was kinked. He called Dr. Su in and they discussed the options and thought it would be best to put a stent in to open it up. They are in there right now doing that and said it would take about an hour. We paged Dr. Su and met him in person to see if he could explain it better to us.
He said the pressures in her right atrium are around 16. A normal babies pressures are between 4-5 and for a Hypoplast they want them around 10-12. They are hoping by putting the stent in, it will improve her sats and buy them more time to see if her heart will get better. If her sats go up after this procedure, they talked about maybe pushing her surgery possibly another 3 months. If not, they would be forced to choose between two evils. They would most likely have to go in and do her Glenn as scheduled in a few weeks, but she would have a complicated recovery and possible long term complications.
I really thought our Gracie Girl was going to give us a break this time and let at least ONE thing be easy but I was mistaken. Dr. Su said they are all aware that Gracie is NOT an easy case and is really high maintenance. Tom told him that she was a lot like me that way, very funny!!
So we are waiting for her procedure to be done. I am not sure how many people are even reading her blog still but I plan to continue to update whoever is interested in her little story! Thanks so much for all of your support, I will post later!
p.s. I tried to load a picture of her and it is not working in the hospital, I will add it to this or a future post later.
p.s.s. I forgot to mention that they said they only do about 6-7 stents in a year during heart cath's. So not very common!
30 comments:
Your family is in our thoughts!!
We'll be praying for your beautiful Gracie.
I've had Gracie (and you) in my thoughts all day. I really can't believe that it's the "Here we go again" road for her. So did the kink happen from the procedure today or has it been there for a while? I'm praying for her. Keep us posted when you have a minute. Big hugs to all of you!!
Oh, I am reading!! :) Sorry you didn't get good news this morning--we'll keep praying!
Gracie, Gracie...you sweet girl! I am so sorry things are proving to be more difficult than expected. I have been thinking of you all day. Keep posting because I will be watching your blog to see how she is doing. You will continue to be in our prayers!!!
Nat
Yes...keep posting! I am an HLHS mom too and I read about Gracie every week! Sorry to hear things did not go as planned today. Our son's procedures never went as planned either! But like Gracie, he is a fighter and makes it through somehow everytime! Good luck, we are praying for little Gracie!
P.S She is on good hands....Dr. Cowely is wonderful!!!
Oh no! I am hoping and praying that everything works out for little Gracie! Hang in there and please keep us updated on what is going on!
I'm praying hard for Gracie. Stay strong!
Keep posting please! You don't know me, but I introduced myself to you in the pumping room at PCMC when Gracie was there the first time. I've been following her since before she was born. We're cheering for Gracie to keep battling. She's a strong little one! Go Gracie Go!
We are reading!! You don't know us but your family is in my mother-n-law's ward so they speak of you often (Rachel Hatch). I also work here at PCMC/NTU. Sweet little Gracie and your whole family is in our prayers every day. She is such a fighter!
God Bless
Of course we're here, waiting for news of your little Gracie! We'll keep her in our prayers!
We check on Gracie everyday. You don't know us, but my mom works with your mom at the school. We got to meet her in August, and I was so excited to show my son Jackson to her. Jax was born with TGA, we didn't know until he was born. He is 5 and doing well now, but I have an idea about how hard it is to watch your beautiful child go through something so hard.
We also have a daughter who was born 1 week before Gracie.
My 4 year old remembers Gracie in every prayer she says. Gracie is well loved around here. We will keep praying for her and your family.
Gracie is the strongest and bravest little girl I have ever seen.
We faithfully read Gracie's blog, and will continue to pray for her. She is an amazing girl, and has overcome so much, and is loved by so many people who have never met her.
Dr. Cowley is Trey's cardiologist. She couldn't be in better hands in the cath lab. He will take good care of her, I'm sure.
We wish you the best today and in the coming months.
One thing I forgot.
When Jax was born he didn't have a hole in his heart, which most TGA babies have. He needed one so that his blood could get some oxygen in it. He had a heart cath when he was like 3 hours old and about 5 1/2 pounds. Dr. Cowley was the one who did it. He put a balloon in and made a hole. Our cardiologist (who left last year) Dr. Bradley said that it was the best heart cath procedure he had ever seen. He said Dr. Cowley is amazing.
I'm new to following your blog, It touches my heart how special your little one is. It made me cry reading your blog, special babies are so amazing and a blessing. My thoughts and prayers are with you.
We are reading!!! I have followed Gracie's story for a while now! I continue to pray and have added the link to the blog on my page under babies needing prayers!
She is such a beautiful baby. I have a baby girl myself (8 months old). I can't help but have a special place in my heart for Gracie too!!!
We continue to pray for Gracie as a family everyday. I have said several little prayers of my own for Gracie today. I just keep thinking about you guys. Hang in there and let me know what I can do to help you out. We love our little Gracie girl, but how couldn't we?..... SHE IS TALAN'S GIRLFRIEND!
Michelle,
I always check Gracie's blog to see how she is doing. I am sorry that she is having a hard time. Hopefully, this stent will do its job.
You are the mother that Gracie was meant to have, Michelle. I admire your strength and determination through all the trials.
I will be thinking about Gracie and hoping that all goes well today.
Marilyn Moore
Oh Gracie, you just keep us on our toes! Back to pacing the house waiting to hear how she is doing. Hope the procedure is over and she is doing ok. Let us know!
I went to the Temple this morning and my thoughts and prayers were for Gracie all while I was there.
Oh how we Love our Gracie
Hi you guys, we are thinking of you and Gracie today, she just likes to be difficult :) We love you all, let us know if you need anything!
Love,
David, Tiff, Brooklyn, Ellie and Sadie
I check in everyday, and I will keep a constant prayer in heart and mind for little Gracie.
I follow you on google reader so I see whenever you update.
hugs & prayers,
Christina
momma to Jacob
I still read your blog. I started reading just after Gracie was born after a "friend of a friend" referred me. I am always amazed by your strength to go through this. I'm pulling for sweet little Gracie!
We check in weekly and are sorry to hear all that is going on. We will keep you in our prayers, and hope gracie does well. Let us know if you need anything.
Emily Gourley
I keep checking your blog as you are in my thoughts and I am saying lots of prayers for Gracie and your family!!
I have never commented but have read Gracie's blog from the very start...I feel attached to her :)...Good Luck!!
Dear Tom, Michele and Gracie,
My prayers along with so many others have been sent heavenward today. I love you all,
Grandma Wiser
I keep up on your little Gracie all the time. I will keep you guys in my prayers and thoughts. I Gracie does very well. You are a very stong person and give me such hope.
I still follow Gracie's blog. We pray for her often. Tyler is scheduled for a cath on Tuesday. Hang in there!
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