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MeaganS

Dd is having bypass heart surgery

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Dd8 has Turners Syndrome, diagnosed 2 years ago. Often associated with that are congenital heart problems. 2 years ago they did an echocardiogram to check, and noticed some problems that they said we'd need to keep an eye on and to come back in 2 years. From our research, we thought these were minor problems that might require some simple surgery as an adult. Fast forward to 2 weeks ago. I scheduled dd8 to get her scan a few months early because we are moving (in 2 weeks!) several states away and didn't want to worry about referrals until we settled. At her appointment, we saw a new cardiologist who informed us that her heart has gotten worse and according to the latest info, she needs fairly urgent surgery on her rapidly dilating aorta. He said her specific problem is very rare in children and she was the subject of the weekly meeting of cardiologists that they have at our hospital to discuss difficult or interesting cases. They all agreed with him. So now we are faced with the realization that our asymptomatic daughter needs serious open heart surgery from very specialized surgeons. The cardiologist doesn't feel comfortable with anyone at several really good nearby hospitals performing this particular surgery and it looks like we're going to end up at Mayo. Which is several hours from our new home.

 

In the meantime, I have to coordinate our move, selling our house, and am moving ahead of dh with the girls by a few weeks. I'm about as stressed as I've ever been in my life and I'm very worried about dd8. I've had to deal with problems with her before but never anything life threatening. This problem isn't going to go away. She will continue to have problems even after surgery and will likely need more surgery in the next decade and throughout her life. I hate that my dd isn't healthy, but at the same time I am SO grateful we caught the problem. This usually goes undiagnosed in most people until it is too late. I really pushed to have her diagnosed with TS at 6 which led us to look at her heart. Her pediatrician just thought she was short but I knew something wasn't right. And we just happened to be scheduled to see this specific cardiologist who told us that he is one of a handful of doctors who knows enough about this issue to recognize the danger it is in her case specifically. We are also blessed because dh got a signing bonus with this new job that will cover any cost we have with this and we aren't going to have a gap in insurance. It's not what we were planning to do with the money, but it is so comforting to not have money be a stress on top of everything else. I feel like God is guiding us, but I still worry.

 

I think this is just a vent. I am at home today, painting the bathroom and just needed to talk to someone about this. Usually I am a very emotionally even, independent person but this has me struggling. If you're a praying person, please keep her in your prayers.

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That sounds SO intense. Even just reading it practically wore me out. Good for you for advocating so hard for your daughter and making them look at her heart, and it sounds like the treatment plan is a solid one, if very stressful. One thing at a time mama!

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Hugs.

 

Can you maybe pause the move to stay where you are and get the surgery there?

 

I would hire packers and movers if you haven't. I would fly in support (grandparents, etc). Look into hotel rentals near the hospital if you'll be far away.

 

:(. So sorry you're going through this.

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Hugs.

 

Can you maybe pause the move to stay where you are and get the surgery there?

 

I would hire packers and movers if you haven't. I would fly in support (grandparents, etc). Look into hotel rentals near the hospital if you'll be far away.

 

:(. So sorry you're going through this.

We actually are blessed to be having movers. In fact, dd is scheduled for a sedated mri for the same day they will be here packing. Even her mri is complicated. We've already decided to hire people to do some of the projects too. So it could be a lot worse.

 

Our family is very supportive and want to help. I can call on any of them at any point and they would come. We're saving that help for the actual surgery though, since they all live at least a day's drive away. Also, our church here is stepping up and even our new church is on board to help.

Edited by Meagan S

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:grouphug:

 

My thoughts and prayers are with you. Vent away.

 

Also, you're doing the right thing going to the best surgeon you can. I am familiar with one of the top pediatric hospitals in the world, and those pediatric heart surgeons and their teams are amazing. They do things that are unimaginable ten to twenty years ago.

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Please check on staying at the Ronald McDonald House. Here is a link on the process in Rochester. You can get on the wait list, then get a referral from the social worker at the hospital. If you can get in, it will save a lot on hotel bills. 

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I am sending hugs to you and prayers to your dd. 

 

I am so glad you caught this and that she is going to get the best care.

 

 

I love all the support that is surrounding you.  I want to just come on over and help you with everything. 

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Holding your DD, your family, and all of the doctors and nurses who will treat her in prayer. 

 

:grouphug:

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Saying prayer for excellent surgeons, that all will go smoothly and she will recover fast. Also that everything else falls into place.

I am sorry this broke in over you so close to a move. One day at a time...sometimes one hour...Hope you have the support of family and/or friends nearby.

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Moving (the getting ready to move part) is one of the worst stressors I've had in my life and I cannot imagine having to add on what you are facing to that.  Many hugs and good thoughts to your family.

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