Music Therapy

[Nev Hyde]

Hi everyone, my name is Nev and i'm new to the group. I am a parent of a little boy who was born with a heart condition called hlhs. Effectively he was born with 1/2 a heart. Three palative operations were needed for him at 3 days, 3 months and 4 years of age. The final operation didn't fair so well and for a year my wife and i did everything we could but in early 2010 he fell into heart failure. Whilst in hospital having a heart transplant workup he pulmonary hemorrhaged into his lungs and arrested. After 3 weeks on ecmo (life support) he was placed onto an artifical heart (berlin) and for 151 days he was hooked up to this machine until a donar heart became available. There were to many traumatic, narrow escapes along his journey to mention. Basically now even though things are as good as they have been for years it seems as if my mind cannot convince my body that the alarms have quietened. The day after my son received his heart i started playing the guitar (4 months ago) and even though i'm not sure if it helped or not, i was able to expressively put together a little piece that sort of sums up how i feel/felt. Please check it out and let me know what you think.

Hoping one day to get off the rollarcoaster,
take care
Nev

 

[anthony]

Hey Nev,

Welcome to the forum. As a parent, I couldn't even imagine what you have gone through.. thank goodness your little man is good though and came through from it all.

Though yes, it doesn't stop the thoughts in the head after the fact... Mate, I empathise!

 

[deer_in_headlights]

Sobbing....

Through tears, welcome Nev...
Sending hugs to you and your family, if you take them...
We've got your back, and are with you.
With love and care,
Deer

 

[Vee Lagrome]

I think your piece is very interesting. I think the way you flash from image to image and sprinkle in a few videos was absolutely striking to me because I think that is a great visual representation of how the PTSD mind seems to work. I can't imagine the suffering and worry you went through and still go through, but I would probably be devastated and running into his room 40 times a night to make sure he's still alive and well! (after watching your video, I'm glad I don't have kids, because I know I'd be running into their rooms right now to take their pulses and other vital signs...lol...)

Thank you for sharing your video. :) It was definitely very interesting to see it as I have never seen someone with PTSD make a video of how they feel about a particular trauma. I wonder if more people should try what you did, though.

Anyway, welcome! :)

 

[Nev Hyde]

Thanks guys. Anthony, no doubt we had a tough road and i feel like my nerves are fried but i am lucky i don't have to look far for inspiration, That is getting back to the mind convincing the body everything is ok, just hasn't happened yet. I would love, what feels like, the second pit in my stomach to go away though. Deer i hope i didn't upset you too much, i was sort of concerned before posting, wheather or not to include the link. I wasn't sure if it was appropriate. Vee, we did think about getting a moniter a couple of years ago but as it turned out we had to live in hospital for the most part of 2010, 1500mls from home as the machine he was hooked up to couldn't leave the hospital grounds, which was good as it only had a battery life of 30 minutes off power. Thanks for getting it, the clip was a difficult entity to put together that i felt needed to be finished, for what reason i'm not sure, maybe to break away from how obsessive we've been over the past 2 years. Take care.

 

[femaleveteran]

I really like the music... ..Good on ya man for being able to play that well after only four months or so. I too liked the video alot. You are really talented non?
take care of the little guy. I too am glad I do not have kids because they would end up to hate me as I am sure I would be the quintessential overprotective mother.

 

[suzie q]

Welcome Nev and thanks for sharing your story and video. Sometimes I think that creative expression is one of the neatest ways of processing our trauma. You at least have a "record" of where you are at that time in your life.

It's also neat that you have this video to play to your son as he gets older. Bless his little heart, he was born into a nightmare and looks like he has the spunk and desire to survive. I'm sure having parents like you has given him a reason to fight. I couldn't imagine going through the rollercoaster ride you have been on. I'm just really glad that he's finally at the bottom of the hill living one day at a time...like we all have to do.
Prayers and hugs...suzie q

 

[deer_in_headlights]

Dear Nev,

No worries, please (((((((Nev)))))))))). I am so glad you posted your video.
I resonate with your pain, fear, hypervigilence... on a deep level.

I hope you'll do more videos and music. It's such a beautiful and powerful way to share your pain and story, and to heal.
With caring and prayers,
Deer

 

[Nev Hyde]

Thanks Suzie and FemVet, our little man has so much to look at already, if you would like to see his blog that i wrote since before he was born its [DLMURL]http://www.hearts-of-hope.com/kellin[/DLMURL] , i wrote it basically so i didnt have to repeat myself 20 times a day to relatives, friends etc, as we went along. Deer, i think anymore would be a way off yet, that tune was anxiety/Ptsd, i'm working on relief/escape at the moment and its shaping up to be a more upbeat tune. But reality continues on and another biospy catheter a few days ago to keep us on our toes. Its only every 4 weeks now so at least that is spacing out a little.
Take care everyone, dont do what i did yesterday and forget my meds two days in a row, one dizzy day that was.

 

[deer_in_headlights]

Hi ((((((((Nev)))))))))),

It's good to see you.

It's wonderful that you're creating upbeat works! I hope you'll share anything you wish with us, as creative works touch and speak to the heart and soul... and you'll bless us all when you're ready to share. :)

I hope the biopsy reports continue to come back with extraordinarily good news.
Please keep us posted as you wish, and if it's ok with you, I am keeping you all in my prayers.

I lost a very dear friend, and her donated heart went to someone who must be very, very blessed as she was among the most wonderful people I've known. May your son's beautiful heart beat strongly for him, and give him a beautiful, new, blessed and full life.

Wishing you all joy, comfort, peace and healing...
Deer

 

[Nev Hyde]

Prayers are always welcome Deer, i did an incredible amount of it in recent times, when things are totally out of control and you know no matter how informed, enlightened you may be, when it comes to a child needing a new heart as a parent, the helpless/powerless feeling is always in the foreground. I struggled for a while praying for another child to pass away to save mine. I did find the right prayer eventually but up until that i really struggled and it made my stomach churn. Cheers Deer

 

[deer_in_headlights]

((((((((((((Nev))))))))))))))