My 13yo needs open heart surgery

[MeaganS]

Only those close to us know yet. For some reason I don't want to share on Facebook yet. We've known for years that she's had a severely dilated aorta that would need attention eventually. Unfortunately her aorta is bulging out faster than her heart is growing, so they've decided to call it. There are a lot of unknowns in her particular case. Usually people with similar conditions as hers are a decade older or more. An added level of complication is the fact that her aortic valve is bicuspid. They are going to try to save it, but very possibly may need to replace it with a mechanical one. Which means a lifetime of blood thinners and adds yet another level of complication to her health (she has liver, developmental, hormonal problems too). Its all that's been on my mind for the last several days since we found out. The surgery will be late January, early February, so not an emergency but still, its a major surgery and I just keep thinking about all that could go wrong. Anyways, I just wanted to tell someone without actually telling someone, if you know what I mean? The forum is good for that. 🙂 

[Catwoman]

I'm so sorry, Meagan, and I will pray for your dd. 

Post about it any time you want to -- we are always here for you!!!

[kbutton]

I am so sorry you're already facing this!!! Hugs. I will PM you some things if I can find them. In particular, at the most recent Marfan Conference (online), they had a whole session on what to expect from this kind of surgery. They focused on what the surgery room looks like, what is typical to expect on the day of surgery, etc. and then from the parent/patient side, what to worry about and advocate for. It was excellent. If it's recorded and accessible, I will do my best to find this and send it to you.

We hope to face this many years down the road or not at all. It's difficult to be on the early side of these things. Outcomes are really strong; they wait until the risk of waiting is greater than the risk of surgery. 

Prayers and hang in there!

 

[QueenCat]

(((Meagan)))

[MeaganS]

1 minute ago, kbutton said:

I am so sorry you're already facing this!!! Hugs. I will PM you some things if I can find them. In particular, at the most recent Marfan Conference (online), they had a whole session on what to expect from this kind of surgery. They focused on what the surgery room looks like, what is typical to expect on the day of surgery, etc. and then from the parent/patient side, what to worry about and advocate for. It was excellent. If it's recorded and accessible, I will do my best to find this and send it to you.

We hope to face this many years down the road or not at all. It's difficult to be on the early side of these things. Outcomes are really strong; they wait until the risk of waiting is greater than the risk of surgery. 

Prayers and hang in there!

 

Thanks! I'd love to see it.

[Tanaqui]

That sounds so frightening and stressful! It's no wonder you don't want to tell all the people in your life just yet.

[fraidycat]

Big hugs. That sounds so stressful.

[WildflowerMom]

I’m so sorry.  I have no advice or btdt experience, but I can offer big hugs and many prayers.  💛💛💛💛

[Corraleno]

I'm so sorry your family is dealing with this. (((hugs)))

[happi duck]

Many (hugs)

[Ditto]

I'm sorry your family is having to go through this.  Sending you lots of hugs and many good thoughts.

[Innisfree]

Sending lots of hugs and hoping you get plenty of support in person when you're ready. 

[TCB]

So sorry you are having to go through this. Will be praying for your dd and you and the family.

[Selkie]

Hugs to you and many good thoughts for your dd. Waiting and worrying is so stressful!

[Kassia]

I'm so sorry about this.  Please please vent here whenever you want/need.  Will be thinking of you and your dd.  ❤️

[YaelAldrich]

That's hard news to hear. I hope you have support from the medical coming as well as your personal network. I'll be praying for you 

[Acorn]

Hugs to you and your family. I’m sorry to hear that surgery will be in her future. I hope that you continue to update here. I will be thinking of your dd.

[Katy]

So sorry you’re going through this. Praying for all of you.

[historically accurate]

I'm so sorry you are facing this. It's got to be super stressful for everyone. (((MeaghanS)))

[Ellie]

((((Meagan and MeagansDD)))) So many prayers!

[desertflower]

I'm so sorry.  I hope the surgery goes well. Sending hugs and prayers. 

[Ausmumof3]

I’m so sorry and hoping for the best possible outcome for your daughter.

[Kareni]

Sending positive thoughts for your daughter's surgery and recovery and good thoughts for your peace of mind.

Regards,

Kareni

[katilac]

Sending all the positive energy! I know someone who had what sounds like the same surgery, the dilated aorta and thought they might have to do the mechanical valve (they didn't!), and it went really smoothly. They were an adult, but quite small physically. They gained a ton of energy after recovering. I hope the same happens for your daughter. 

[Jaybee]

I'm sorry; that sounds so scary. I'm praying for peace for you all, and a successful surgery.

[Junie]

Hugs and prayers.

[Melissa in Australia]

Sending positive thoughts 

Hugs 

[mommyoffive]

I am so sorry.  I will be thinking so many positive thoughts to your dd. 

[Granny_Weatherwax]

I am so sorry.  Sending lots of gentle hugs.

[Bootsie]

I am so sorry that your family is dealing with this.  I know the waiting over the next few months will be stressful. 

[mom31257]

Praying for you and your family to have peace in the coming weeks and for everything to go smoothly with the surgery! 

[Annie G]

Hugs and prayers for an uneventful surgery and smooth recovery.

[Farrar]

Holding you in the light. All those unknowns are so scary.

[Scarlett]

So sorry she has to go through this.  ((((((hugs))))))  Poor girl.  Poor momma.

[Spryte]

I’m so sorry you’ll all have to go through this. Hugs to your whole family.

This is a good place to tell people without telling people. 
 

[Insertcreativenamehere]

((((HUGS))))

I have a child who had a congenital heart defect and had surgery to repair it at about 18 months. He also had several other more complex surgeries on other parts of his body so I get how tough it can be. In our case, it was easier in some ways because he was younger and didn't realize what was going on. Praying all goes well for you!