Stress Level @ 100

[Singleton]

Sitting at Rady’s Children hospital in SD. Daughter has a cardiac MRI non sedation scheduled today. She was diagnosed with Left ventricular non-compaction (LVNC) cardiomyopathy last year.

She is now required for life to get an ECHO and an MRI annually to monitor for heart muscle weakness and/or arrhythmias.

Last year was the baseline tests. Today is the first MRI since baselines were taken. Any signs of degradation and life starts to change for her. No real cure, but treatment options very based on decline identified. Going to be a stressful few weeks until results are back.

Biggest fear is having to tell her she can’t play sports anymore. It would ruin me if I have to tell her she can’t play volleyball (indoor and beach), overland hike, wakeboard, snowboard, etc.

Explaining to her, her heart does not work like everyone else’s was hard enough last year.

Time to go watch KOH. Mom is with her, so all I can go is wait until finished (2 hours).

 

[jesco]

Oh man, so VERY VERY sorry to hear this. Praying for you and your family and most of all your daughter.... Stay strong

 

[v6toy4x]

I am not a praying kind of guy, BUT there are exceptions to everything

 

[RichL]

Hoping for the best. Good luck.

 

[Waterjunky]

We are all praying for your daughter and your family in our own way......

 

[DB / HAV]

Praying

 

[Thunderhead1]

headed your way

 

[OLDRAAT]

Prayers to your family during these trying times.

 

[monkeyswrench]

The job of being a parent is far more stressful than most would think. It's a 24/7 deal, the pay sucks and there is no training. You've already done more than many other "parents", you're doing what you can. You'll continue to do whatever you can as well.

Having to explain to your child that they are different than others is a hard thing to do. Just be sure that she knows you'll always do your best for her. You may know it, and your wife may know it, but make sure your girl does as well. At times the younger ones get themselves lost in the problem, and not see a parent as part of a solution.

 

[JB in so cal]

Holy hell!! Life’s not fair, Rob. Hang in there.

 

[Singleton]

She just got rolled into the room. MRI will last 90 minutes.

Thanks for all the support and words.
The support to members is one of the best parts of this place.

 

[ltbaney1]

keep your head up. my thoughts go out to you and your family, hoping for the best.

 

[rivermobster]

Oh my...

Incredible amount of stress. Nothing is worse than your kids being sick.

Hoping for the best for All of your clan.

 

[boatpi]

Sorry dude you have to look on the bright side. Can you imagine 30 years ago technology

look at the care that she’s been given now and how procedures having to do with hearts have changed.

 

[buck35]

Positive thoughts your way!

 

[LazyLavey]

thoughts and prayers brother

 

[JDKRXW]

Positive thoughts going your family's way.

Always remember ---- kids are way tougher than you think they are - and so is your daughter

 

[Ziggy]

Positive thoughts & vibes being sent your family's way Rob.

 

[Done-it-again]

Payers sent your way Hang in there.

 

[DaytonaBabe]

Saying a prayer for her and you guys as well. Hoping for good news. Hang in there and keep us updated.

 

[jetboatperformance]

I'd rather take the "hurt" than have any of my Babies endure it

 

[beerrun]

Is there anything you need or we can do for you?

 

[RVRKID]

I'm so sorry and hoping for good results.. Thoughts are with you and your family, believe me I know how hard it is!!

 

[RitcheyRch]

Sorry to hear that. Prayers sent for positive news.

 

[hallett21]

Sitting at Rady’s Children hospital in SD. Daughter has a cardiac MRI non sedation scheduled today. She was diagnosed with Left ventricular non-compaction (LVNC) cardiomyopathy last year.

She is now required for life to get an ECHO and an MRI annually to monitor for heart muscle weakness and/or arrhythmias.

Last year was the baseline tests. Today is the first MRI since baselines were taken. Any signs of degradation and life starts to change for her. No real cure, but treatment options very based on decline identified. Going to be a stressful few weeks until results are back.

Biggest fear is having to tell her she can’t play sports anymore. It would ruin me if I have to tell her she can’t play volleyball (indoor and beach), overland hike, wakeboard, snowboard, etc.

Explaining to her, her heart does not work like everyone else’s was hard enough last year.

Time to go watch KOH. Mom is with her, so all I can go is wait until finished (2 hours).

Praying for her

 

[Havasu blue label]

Praying

 

[Burnin Daylight]

Praying!!

 

[SBMech]

Positive thoughts and Prayers for your family and Daughter Singleton!

 

[Singleton]

Is there anything you need or we can do for you?

Appreciate the note.
Just need a place to type out what is in my head and get away from the stress

 

[beerrun]

Appreciate the note.
Just need a place to type out what is in my head and get away from the stress

We are in Ramona if you need to get away or need something. Chris 619-733-9180

 

[Singleton]

MRI is done.
She is getting changed and IV’s removed.

2-3 weeks until we get results. I hate the wait

 

[angiebaby]

Sending positive thoughts for the results. I'm sure she's aware of what the situation may mean for her sports, even if she's in denial. She's old enough to recognize that there may be a chance her activities change significantly. It will still be a blow and I sincerely hope it doesn't happen and that's not a conversation you need to deal with.

 

[Mr. C]

Sitting at Rady’s Children hospital in SD. Daughter has a cardiac MRI non sedation scheduled today. She was diagnosed with Left ventricular non-compaction (LVNC) cardiomyopathy last year.

She is now required for life to get an ECHO and an MRI annually to monitor for heart muscle weakness and/or arrhythmias.

Last year was the baseline tests. Today is the first MRI since baselines were taken. Any signs of degradation and life starts to change for her. No real cure, but treatment options very based on decline identified. Going to be a stressful few weeks until results are back.

Biggest fear is having to tell her she can’t play sports anymore. It would ruin me if I have to tell her she can’t play volleyball (indoor and beach), overland hike, wakeboard, snowboard, etc.

Explaining to her, her heart does not work like everyone else’s was hard enough last year.

Time to go watch KOH. Mom is with her, so all I can go is wait until finished (2 hours).

having to tell one of my kids they couldn’t do something would be devastating. I have no idea the feelings or emotions you could be going through.
I’d almost want to say. Do what makes your kid happy. And then being a ( lack of a better word) selfish parent who wants nothing but the best for my child has to say you can’t just do some things like other kids.
My thoughts and prayers are with you and you family.

 

[bluebleeder]

Prayers to you and your family

 

[Mr. C]

Appreciate the note.
Just need a place to type out what is in my head and get away from the stress

One good thing this place is good for. Is venting. Understanding. And just being there for us when we hit the tough times.

 

[havasujeeper]

Holding my breath for a great outcome on the MRI

 

[RiverDave]

Your family is in my prayers!!

 

[Socalx09]

Sending good thoughts and prayers to you and your family. Sorry you have to go through this. Your daughter is strong!!!

 

[DILLIGAF]

Sitting at Rady’s Children hospital in SD. Daughter has a cardiac MRI non sedation scheduled today. She was diagnosed with Left ventricular non-compaction (LVNC) cardiomyopathy last year.

She is now required for life to get an ECHO and an MRI annually to monitor for heart muscle weakness and/or arrhythmias.

Last year was the baseline tests. Today is the first MRI since baselines were taken. Any signs of degradation and life starts to change for her. No real cure, but treatment options very based on decline identified. Going to be a stressful few weeks until results are back.

Biggest fear is having to tell her she can’t play sports anymore. It would ruin me if I have to tell her she can’t play volleyball (indoor and beach), overland hike, wakeboard, snowboard, etc.

Explaining to her, her heart does not work like everyone else’s was hard enough last year.

Time to go watch KOH. Mom is with her, so all I can go is wait until finished (2 hours).

Wow.....That def would be a tough road. Hoping for the best going forward

 

[Bullet28]

My thoughts and prayers are with your daughter and family. God’s Blessings

 

[DanG]

Sending positive thoughts for a good outcome.

 

[CLdrinker]

Best wishes

 

[17 10 Flat]

Positive thoughts....

 

[HBCraig]

Best wishes for her.

 

[500bbc]

MRI is done.
She is getting changed and IV’s removed.

2-3 weeks until we get results. I hate the wait

Good luck, prayers sent.

 

[cofooter]

Best wishes and positive thought for your family and daughter!

 

[Bajap1]

Best of luck to your family...have you tried Scripps for another opinion? I had open heart there for a bad Aortic Valve they were amazing

 

[Bajap1]

We are in Ramona if you need to get away or need something. Chris 619-733-9180

I live in the Country Mistakes in Ramona as well...let me know if you need anything

 

[beerrun]

I live in the Country Mistakes in Ramona as well...let me know if you need anything

Haha you don't like it here? Where they don't enforce the rules evenly

 

[Bajap1]

Haha you don't like it here? Where they don't enforce the rules evenly

I'm a contractor so they are all over my ass, and the selective enforcement is just great lol