Mended Hearts Open Forum

So I recently joined and posted about my son having a crazy rollercoaster with all of his heart defects and along with having heterotaxy. Well he was gifted with an amazing gift...A HEART!! Bless that family's selfless act that saved not only my sons life but others as well ❤ So now he got transplanted August 31st and has had a rocky recovery. He got extubated 3 days later but was having a hard time breathing so they gave him a full face mask. They did a chest xray and seen he had fluid or gunk around his lungs so they gave him diuretics to remove that fluid. The Ear, nose, throat dr was called in because of a weak cry that hasn't healed...well his left vocal cord Is paralyzed...sweet 😒 now yesterday September 9th his nurse called and said they had to intubate again 😔 he was getting tired and was turning a grey dusky color so they seen he was struggling. Today I called and she said he is doing a little better than yesterday and that his xray looks a little better and his chest tube output is draining a tiny bit less which is good but she said his white blood cell count is up so they did cultures to see if there's any line infection or pneumonia.  Praying everything comes back clear. I really want to be there for my sweet boy but the Ronald McDonald house is packed and we have been waiting over a week and a half already 😔 we have no money to live in the waiting room either so we're out in buffalo...3 hours from Pittsburgh waiting for a call for a room when all I want is to be there for my baby boy. I feel like he does better when we're there. My fiance does side jobs with a members husband which is LIFE SAVING! but we have to get out there 1st...but as long as he's doing ok and stable we're working on things to get out there ❤

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Jamie Ferraro
Buffalo NY
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Hi Jamie, 

I'm a Pittsburgh girl! MY son's treatment is at CHP as well. I'm so thrilled to hear that he was given such an amazing gift of life through a transplant. I'm so sorry that you can't be beside him. I can't imagine how hard that is. I hope things continue to go well and that you can get a room at the RMH ASAP so that you can be with him. I know he's in good hands but I'm sure he misses his mommy. Hang in there and I hope things work out soon.

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Andrea Baer
Grapeville PA
(724) 396-7820
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Jamie, your son has gone through a lot in his short time on this earth. I know you are thankful for the transplant, and I hope everything else will eventually come together for you and your beautiful son.
The members of Mended Hearts and Mended Little Hearts are wonderful, and are always there when you need them for support.
If your hospital has Mended Hearts Volunteer Visitors, I hope you will reach out to them so they can help you while your son is in the hospital.
I waited in ICU for five weeks before receiving my new heart. I was in ICU for two months after the transplant. This was 18 months ago. I wasn't expected to make it, but I proved them wrong. A Mended Hearts Volunteer was there every week for support. I really appreciated that.
I now volunteer at the hospital where I received my transplant, visiting other heart patients, trying to help them through their struggles to get better.

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Dale (Rick) Whitney
Vice President Mended Hearts Chapter 12
Temple TX
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Hi Jamie,
my granddaughter received her new heart at 3 mths of age at CHP!! Your son is in the BEST of hands👍🏼❤️ She was born with pulmonary atresia and HRHS.  Recovery was rough like a "rollercoaster" but you have to give it time; trust me. I know how scary it is but their little bodies have to adjust. We r two hrs east of Pitts and my husband and I were over there every week with our dd for 6 mths til she could come home.  Ronald Mc Donald is always packed but did u look into offsite housing? Jonathan from transplant social work can help with that…reach out to me anytime.  Prayers for your son but these little warriors are tougher than we give them credit!

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Lisa Riley-Levine
Altoona, PA 🫀
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Hi Jamie,  Our thoughts are with you....  Stay in contact with Ronald McDonald House.  They helped my family immeasurably during my nephew's multiple heart operations at Boston Children's Hospital.  They are an exceptional organization and your son is in an exceptional facility..

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Kat Edwards
CA
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