Stress Level @ 100

[HNL2LHC]

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

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

So sorry to hear of the current state of your family. I can understand the stress of waiting. In case you don’t know the wife does an MRI twice a year to check current status of her condition. It has been about 4 years now. Not sure of your daughter’s condition and if even possible but both UCSF and Mayo that have performed the MRI have provided results within 3 hours of the MRI. Might be worth asking around. I know that having the results for my wife calms her quite a bit. The week before she goes in is rough. Nothing I can do to calm her. If we had to wait another 2 weeks I could not imagine the level of stress for our whole family.

Best of luck to your daughter and the family. Please update RDP once you know the results.

 

[beerrun]

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

We are on dartolo and daza. We get letters all the time we have an old truck as yard art and one person that doesn't like it

 

[Bajap1]

We are on dartolo and daza. We get letters all the time we have an old truck as yard art and one person that doesn't like it

Lol same! scarbery and springwood

 

[Singleton]

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

Rady Children’s Ranked Among the 10 Best Children’s Hospitals in the Nation​

Her Dr is the Division Chief, Cardiac Surgery & Cardiac Transplant Services.

 

[Singleton]

So sorry to hear of the current state of your family. I can understand the stress of waiting. In case you don’t know the wife does an MRI twice a year to check current status of her condition. It has been about 4 years now. Not sure of your daughter’s condition and if even possible but both UCSF and Mayo that have performed the MRI have provided results within 3 hours of the MRI. Might be worth asking around. I know that having the results for my wife calms her quite a bit. The week before she goes in is rough. Nothing I can do to calm her. If we had to wait another 2 weeks I could not imagine the level of stress for our whole family.

Best of luck to your daughter and the family. Please update RDP once you know the results.

Reason for the delay in results. Getting time with the Dr to review results with us.
I force him to review them with my daughter, so she knows what is going on and can ask her questions.
My daughter usually has a list of questions she asks the dr. We tell her to write everything down over the week. Her list right now 1) can I play volleyball, 2) can I snowboard, 3) what do I need to watch for.. If my wife and I wanted the results alone, we could get early next week.

 

[SoCalDave]

Prayers sent for your daughter and you as parents.

 

[Romans9]

Reason for the delay in results. Getting time with the Dr to review results with us.
I force him to review them with my daughter, so she knows what is going on and can ask her questions.
My daughter usually has a list of questions she asks the dr. We tell her to write everything down over the week. Her list right now 1) can I play volleyball, 2) can I snowboard, 3) what do I need to watch for.. If my wife and I wanted the results alone, we could get early next week.

You’re a smart man.

Very wise and prudent of you to let her hear what is going on.

It is a great blessing to have access to the technology that helps you to know what to expect and can enhance your daughter’s life.

Redeem every waking hour and enjoy the great reward that a child brings to your life. Nothing can match it.

Wishing you comfort, peace and a positive diagnosis!

 

[Cole Trickle]

Positive thoughts. Nothing tougher than being a parent and wanting the best in life and health for our kids.

Regardless I would be getting multiple opinions.

 

[Singleton]

Finally got results yesterday!
The MRI showed that the Left ventricular non-compaction (LVNC) cardiomyopathy she was diagnosed with based on the EKG is within normal ranges. Doc said it was below normal operating ranges and her charts have been updated with the diagnoses being removed.

So glad that is over.

 

[hallett21]

Finally got results yesterday!
The MRI showed that the Left ventricular non-compaction (LVNC) cardiomyopathy she was diagnosed with based on the EKG is within normal ranges. Doc said it was below normal operating ranges and her charts have been updated with the diagnoses being removed.

So glad that is over.

Thank god! Glad to hear she’s ok.

 

[monkeyswrench]

I'm happy for you all! Actually, most happy for her. As parents, being worried is in the job description. Sucks, but true. As a youngster, this was a heavy blow to deal with. Stuff like this will help her with "adulting", but some parts of adulting really suck.

 

[throttle]

Finally got results yesterday!
The MRI showed that the Left ventricular non-compaction (LVNC) cardiomyopathy she was diagnosed with based on the EKG is within normal ranges. Doc said it was below normal operating ranges and her charts have been updated with the diagnoses being removed.

So glad that is over.

Amen!

 

[JB in so cal]

That was a long couple weeks...glad its a positive result!

 

[joecfd1]

 

[DB / HAV]

Awesome news

 

[Singleton]

That was a long couple weeks...glad its a positive result!

I had to tell Rady’s, I am not paying the $2500 bill until results are given.
After 4 weeks we got an appointment for results

 

[Flying_Lavey]

Finally got results yesterday!
The MRI showed that the Left ventricular non-compaction (LVNC) cardiomyopathy she was diagnosed with based on the EKG is within normal ranges. Doc said it was below normal operating ranges and her charts have been updated with the diagnoses being removed.

So glad that is over.

That is great news!

I didn't see your post originally. I have some experience with kids being diagnosed with degenerative terminal conditions. My 2nd child was diagnosed with epilepsy and a version where it really only occurs at night, while sleeping. After we moved back to Cali, her neurologist re-evaluated her with another slept study and removed the diagnosis. That was a relief.

My oldest was diagnosed with Homocystinuria which is a terminal condition that doesn't allow her body to diagnose a certain amino acid that is in almost all meat. My little carnivore is now forced to be a vegetarian and take copious amounts of B6 nightly. Her blood is taken several times a year to monitor her homocystine levels to make sure they don't become too elevated.

The baby was diagnosed with a pituitary gland deficiency which results in her being small, but more importantly, she is hypoglycemic because of it. So she had HGH injections every night and constant blood sugar monitoring.

Giving them the news was horrible. C9ntinuing to make sure they take their medicine regularly and not do the things that their conditions don't allow them to do is another challenge altogether.

 

[Singleton]

That is great news!

I didn't see your post originally. I have some experience with kids being diagnosed with degenerative terminal conditions. My 2nd child was diagnosed with epilepsy and a version where it really only occurs at night, while sleeping. After we moved back to Cali, her neurologist re-evaluated her with another slept study and removed the diagnosis. That was a relief.

My oldest was diagnosed with Homocystinuria which is a terminal condition that doesn't allow her body to diagnose a certain amino acid that is in almost all meat. My little carnivore is now forced to be a vegetarian and take copious amounts of B6 nightly. Her blood is taken several times a year to monitor her homocystine levels to make sure they don't become too elevated.

The baby was diagnosed with a pituitary gland deficiency which results in her being small, but more importantly, she is hypoglycemic because of it. So she had HGH injections every night and constant blood sugar monitoring.

Giving them the news was horrible. C9ntinuing to make sure they take their medicine regularly and not do the things that their conditions don't allow them to do is another challenge altogether.

That is a ton of stress on you and your family!

 

[steamin rice]

Good news. It's scary and stressful when things aren't 100% with kids

 

[DLC]

Finally got results yesterday!
The MRI showed that the Left ventricular non-compaction (LVNC) cardiomyopathy she was diagnosed with based on the EKG is within normal ranges. Doc said it was below normal operating ranges and her charts have been updated with the diagnoses being removed.

So glad that is over.

Great News Congratulations !



Just saw this thread.

For all the Inmates In SD

Rady Children's Hospital is one of the Best in the Country !


My older Sister born in 1964 w/ a deformed heart only 3 chambers, Dr Lamberti - Cardiologist did an experimental surgery after her birth. Dr Lamberti shared his knowledge & experiences with other cardiologists over the years.

My sister had 8-10 open heart surgerys in her life time. All at childrens hospital, even as an adult.

She passed away in 2020 due to COVID on February 29, Leap day !

She was Very Special Person, Experimental medications looking for reactions, being on the Heart transplant waiting list, not being able to have children


They have learned so much over the years when it comes to being Heart Healthy as a child.

 

[FreeBird236]

Great News Congratulations !



Just saw this thread.

For all the Inmates In SD

Rady Children's Hospital is one of the Best in the Country !


My older Sister born in 1964 w/ a deformed heart only 3 chambers, Dr Lamberti - Cardiologist did an experimental surgery after her birth. Dr Lamberti shared his knowledge & experiences with other cardiologists over the years.

My sister had 8-10 open heart surgerys in her life time. All at childrens hospital, even as an adult.

She passed away in 2020 due to COVID on February 29, Leap day !

She was Very Special Person, Experimental medications looking for reactions, being on the Heart transplant waiting list, not being able to have children


They have learned so much over the years when it comes to being Heart Healthy as a child.

Seems so unfair after all she'd been through, may your sister rest in peace.

 

[Ducksquasher]

God Bless...glad to hear.

 

[Warlock1]

Super glad to hear this. Nothing worse than not knowing what is happening. The relief that one feels after getting a good diagnosis is palpable.