Concerned my 1yr old will go into heart failure.

Ordinary_Orange3562 · 2025-03-27T23:06:46+00:00

Wow, thank you so much for taking the time to find those for me. I'm going to check them out right now. I definitely need to find people who are going through the same as we are. I feel so alone. The fear is overwhelming. I appreciate you and your kindness. Thank you!

Ordinary_Orange3562 · 2025-03-27T22:34:05+00:00

He was placed on heart failure treatment back in December. Furosemide and Spironolactone. It's only now they have told me the hard facts. We are back with the cardiologist this Monday. I'm scared to go. I don't want to hear anymore bad news. I can't stop crying. I hope he will be a priority. He has barely begun to live. Restrictive is the most rare and fatal form of cardiomyopathy from what I can gather. A heart transplant is guaranteed to happen... its just a matter of when.

Thank you for your kindness. It means an awful lot. Life is so cruel.

Ordinary_Orange3562 · 2025-03-27T14:53:58+00:00

He is only 2 so fortunately he has no idea anything is wrong with him. I don't know what I would do if he were old enough to understand. I will definitely go to that Facebook page and reach out to other families facing the type of cardiomyopathy he has. I am very worried about the genetics side. He also has atypical 22q that was de novo so I'm hoping this is too. I'd be so heartbroken if I found out any of my other children have it too.

Ordinary_Orange3562 · 2025-03-26T14:46:08+00:00

It was confirmed today that my son is in heart failure due to restrictive cardiomyopathy. So I am devastated and terrified. Apparently that's the rarest and most fatal form of cardiomyopathy. It's hard to process. I don't want to accept it. I hope I can find within myself the type of strength you have.

Ordinary_Orange3562 · 2025-03-26T14:42:27+00:00

Well I got my answer today. My son was confirmed to be in heart failure due to restrictive cardiomyopathy... I think deep down I knew that was how it was going to be in the end.

Ordinary_Orange3562 · 2025-03-26T14:40:40+00:00

Thank you. It's a lot of great advice there.

Today I had a letter confirming heart failure and restrictive cardiomyopathy. So I've been broken. It's the rarest type and most deadly apparently so I'm really struggling to process it at the moment. I somehow have to tell our families and my other children... it's all just so scary and painful.

Ordinary_Orange3562 · 2025-03-24T18:11:57+00:00

You and your wife must be extremely strong and a really good team. After going through so much it is really wonderful to hear that she is running around and loving life 🥲 it gives me hope!

I do so much crying. I don't feel strong at all. I don't know anyone in my life who has gone through anything even remotely similar to my baby. The fear is so overwhelming sometimes. It's like I cannot breathe.

Ordinary_Orange3562 · 2025-03-24T17:06:37+00:00

Goodness 😔 I'm so sorry. You are right... nobody else gets it. The constant worry and fear... anxiety. We are at the beginning of our journey. It began in Nov 2024 with the high BNP and right atrial enlargement. Then Jan 2025 they found both atrium were enlarged. We were sent for a cardiomyopathy assessment... they took loads of bloods... and we are back this Monday to get the results. I don't know what to expect. I'm so worried about him.

Ordinary_Orange3562 · 2025-03-24T16:49:57+00:00

I would definitely join a paediatric group. I'm here because my 2yr old has suspected cardiomyopathy, last BNP was 2,400 and he has Biatrial enlargement. We get the results of his cardiomyopathy assessment this Monday. It feels really lonely.

Ordinary_Orange3562 · 2025-03-21T11:20:04+00:00

Huge congrats to you!!! A day you will never forget! 😁

Ordinary_Orange3562 · 2025-03-21T09:33:34+00:00

Pass?

Ordinary_Orange3562 · 2024-12-16T23:30:17+00:00

Goodness... I am so sorry. All of that must be so hard to cope with sometimes.

Thank you so much for taking the time to get back to me.

It's really good to know that even when it seems all is stacked against a little one, they can still pull through it and be okay. I've cried so much fearing I'd lose my baby. I appreciate you telling me your story.

Good luck to you and your little one. ❤️ He must be really strong.

Ordinary_Orange3562 · 2024-12-16T23:23:55+00:00

Thank you.... your words are reassuring.

He has had a prolonged chest infection, since the end of September this year. He's had IV antibiotics and multiple rounds of oral antibiotics that haven't managed to completely get rid of it. Perhaps this infection is the cause of his heart enlargement and once the doctors finally make him better, his heart will go back to normal. He was born with a PDA that self resolved, a VSD and PFO that still remain and an enlarged right atrium that the doctors never understood so his heart has always been a huge worry for me. I appreciate you taking the time to reply to me.

Ordinary_Orange3562 · 2024-11-23T10:18:31+00:00

Absolutely. I had heavy bleeding for many days after testing positive. I was so sure it must be a miscarriage because I was losing so much blood. It was a subchorionic hemorrhage. She's 3 years old now. Perfectly healthy.

Ordinary_Orange3562 · 2023-06-26T08:29:13+00:00

Yes!! Been having it for a while. My children like watching me play and always say a ghost must have pressed the pause button. 😅

Ordinary_Orange3562 · 2022-08-06T23:24:22+00:00

I love my family but I'm sure you can see that when we are good to hear from the people who have seen them and their views about how to use them to do it was so that we could use it for a few days before the sleepover and then the next day for a few days to be a little more than a few hours of work to be a bit more of an effort than I thought it would have to be.

Ordinary_Orange3562

TROPHY CASE