For the past few weeks Sydney has had purple lips and hands when she wakes up from her naps. At first I was not that concerned, I thought that maybe she got a little cold when she was asleep. Since Sydney's open heart surgery she would get purple lips and hands when ever her body was cold. As the weeks went by I started seeing her have purple lips more and more when she woke up, even after I had done everything I could to make sure that she was warm enough as she slept. About two weeks ago Sydney was purple after every nap for several days in a row so I decided to call her Pediatrician and see what she thought. Dr. Smith was concerned enough to call Sydney's cardiologist, who then called me. Dr. Etheridge thinks that we need to get Sydney's heart checked out. She thinks that Sydney maybe having some problems with the hole in the top two chambers of her heart or maybe something is going on with the regurgitating truncal valve or her pulmonary valve. Sydney's pulmonary valve is the one that will need to be replaced with open heart surgery as her heart outgrows the donated valve that they put in during her first surgery. When Sydney was born her aortic and pulmonary artery was fused together into one common truncal artery. Both her aortic and her pulmonary valves are regurgitating valves meaning that they both leak blood back into her heart, if the valve is leaking a lot of blood back into her heart then it could involve some type of surgery. Sydney is going to need a sedated echo done on her heart up at Primary Children's, the date for her appointment is set for Tuesday June 3rd at 1:30 p.m. Because she will need to be sedated for this echo she will need to be fasting from 9:30a.m. untill her precedure is done.
To say the very least I am trying my hardest to not freak out! I have been working hard on living in the now and trying not to have as much anxiety about Sydney's next surgery. Now that her next surgery is maybe closer then planned, I am feeling all that old anxiety rushing back at me in waves! Honestly, I feel like I might throw up! The last time that we were at Primary's, Sydney was admitted for five days for an infection where her incision was. The thought of going back, even though it is just for testing, scares me more than I would like to admit! I know that it is no use worrying about these tests, because we have always known that Sydney is going to need more surgery eventually. I just hoped that Sydney's next surgery wouldn't have to be until she is older so that she would be capable of understanding more of what was happening to her. So for know I am going to work on taking big deep breaths, in and out, and saving all my anxiety and worry for when we find out what her test results show, and where we need to go from there.
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22 comments:
My stomach hurts too. I know how you feel. Everytime I found out there was something else wrong after Kate's surgery, I was literally sick. It HURTS to think of something else happening to your little one. The best day of my life was when they told me that her cyst was a one time thing and it would never come back. I wish they could've told you the same after Sydney's first surgery. You will for sure be in my prayers. I'm so sorry you have to go through this. I'm not THAT close to Primary Children's, but I'm not that far either. If you need somewhere to crash or even just a place to stop and pee, please let me know! My email is kristenlotz@hotmail.com and my number is 801-358-9689. I mean it. Call me if you need anything!
I'm so sorry. If you need anything, please let us know.
We are thinking of you, and you are in our prayers. You are a strong woman, with a strong daughter!
My heart seriously ached reading this. I am so sorry that you are having to go through this sooner then you were expecting. Your family will be in our prayers and SERIOUSLY if you need anything, let me know.
WOW, this is not what I was expecting to read from your blog. I am sorry that Sydney might need surgery sooner than later. I think there is never a good time for surgery, but at least if she needs it she will be having it in the summer months when there are less kids at PCMC with RSV.
Please keep me posted as to when you are going up for the tests and I will try to be there if you want as an extra hand to hold for support.
As wonderful as PCMC is, I also understand how your stomach can turn inside out when walking through those doors because it means you are there for a specific reason.
I will be keeping you all in my prayers.
Heart Hugs,
Carolyn
Oh wow! I will for sure be keeping you guys in our thoughts and prayers. Its hard to do as a parent, but you are smart to focus on her now and try not to stress out about what it could be. Hopefully the tests come back showing that it isn't as serious as expected. I know its so hard but try and stay positive!! I am thinking about you, tons!!!
I truly know what you mean about the sick feeling. I have been feeling it since we got the results back from Ashton's test. We are still waiting for a date for his cath. We will be praying for you and your family. Let me know if there is anything I can do. Loves, Carolyn H.
We'll be prayin for ya. It will all get better soon!
Our prayers are with little Sydney that she can avoid surgery for awhile longer. I can't imagine withholding food from a 1 year old when they don't understand what's happening. How sad.
I hope she doesn't require surgery! I'll be sure to keep her in our prayers!
I hate to say this but I know exactly how your feeling about right now...I would feel the anxiety so bad that at times I would just get mad and the thought of PCMC and the whole hospital thing again...sometimes it was more then I could handle. But I know that I learned alot about myself and that would have never happened if it wasn't for the trials that Brinley has been through. Lately we have had Brinley say the prayers at night and she always asks for her heart friends to be blessed with health and to be watched over. We will be thinking of Sydney over the next few weeks...and hoping for the best. Please let us know if there is anything we can do...
Hugs and Prayers,
Mike & Family
This breaks my heart! I wish there was something I could do. We'll be thinking of you and praying for all the best for you & your family!
Hang in there & trust that everything will work out... it always does.
Hello!
I just wanted to give words of encouragement. I have truncus arteriosus and I've had 2 surgeries and will be going in for my 3rd in June. I am 21. It seems like many kids with TA have one surgery before 1, and ususally the 2nd from 4-14. I happened to have both of mine at 3weeks and 3years, and havent had any symptoms or problems for almost 18years. I'm just now starting to get tired and have chest pains. I've only known of one other girl that's my age and I've contacted her on Facebook.com. I just wanted to tell you that Sydney will get through it. Little kids are troopers and as long as they don't see YOU worry, THEY won't worry. One word of advice: KNOWLEDGE. Look online for descriptions for the condition, prognosises, others that have it and their struggles, new advancements in technology in different parts of the country. Try your best not to restrict your little miracle child too much for the sake of not wanting to cause her pain later. Sooner or later surgery and catheters and problems will come, let Sydney decide when she's tired, when she doesn't want to be in gym etc. Having a CHD limits a childs developement in their personality as well and self esteem if you ALWAYS go by what the doctor imposes as limits. I'm not saying ignore what they have to say, but I AM saying give your child more credit than that. Doctors say warnings and risks for the worst case scenarios. EVERY child is different and every child can conquer more than you can imagine. And when they get the opportunity to break a "restriction" rule as they get older and the pressure of being "different" sets in, they will, and if they aren't used to such activity, they're MORE likely to damage something in their heart than if they've lived actively. I've learned this from growing up with TA. I hope everything goes well!! Please please stay in contact. My email is Cateyejess@yahoo.com and my name is Jessica. :D
Caralee! I think it's in a mother's genes to worry about her child. But I guess where this is where faith & hope really come into play, eh? I'm sending good vibes your way!!
I am truly sorry caralee! I can't even imagine what you feel, other than the fact that I'm a mom and worry about my girls and possible scenarios! Hang in there! TAke big breaths, we're all here for you! We'll be praying for you guys! She's a fighter and so are you guys! Keep fighting! I would love to get together with you and your girl sometime. She's a beautiful girl and loved the wedding pics!
oh that just brings Tears to my eyes! :( my prayers are with you and your family!
*i saw your sister yesterday that lives in Pinevalley townhomes...(spencer is her landscaper) :) and i can't beleive how much her little girl looks like Sydney...both are so cute!
You are in our prayers...God is in charge and he knows your heart. All the best. I love that comment above who has been through it all...cool.
Love you guys tons. robin
I have worked with Primary Children's so much and they are some of the best of the best! Sydney will be in good hands and definitely in my prayers. Keep us posted.
Darn it, I know that feeling all too much. I am glad you are getting it checked out though. I read your posts on the IHH board, and I wanted to respond to them, and I was dealing with Rhett's RSV gunk, and I never got around to it.
But I have been thinking of you tons, and wanted to send you some cyber hugs.
Let us know if we can do anything for you while your up here okay?
((HUGS))
Pam and Rhett
Oh, no! We're praying for you and you know that Heavenly Father is looking out for you. It's easier to say than let yourself feel good about at this point, but know that you're loved and that He cares about you and your little family.
Good luck! *hugs*
Thanks for the update! I can't even imagine what you are going through right now. If you need anything just give me a call! Remember you are loved and have lots of friends and family to help you get through this! Sydney is in our prayers!
Purple--So scary to hear. I will be praying for you guys.
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