A little update on our grandson Levi,he was sent home from hospital yesterday to live his life at home.He is not doing well.If there are any Pediatric cardiologist out there that know anything about why a heart would calcified on inside and outside please reach out to me @DrMarcSiegel .Please continue to pray for our family and his 6 year old brother.
Today is my “Alive Day”. On august 6th 2010 I stepped on an IED. I lived and Daniel Greer died. I spend 364 days a year dreading today. The emotions surrounding today are too complex and difficult to explain. I am overwhelmed with a wave of guilt and gratitude that feels inseparable and at times indistinguishable from one another. I wish 1000 times over Daniel Greer had lived and I had died that day. Yet, because he made that sacrifice I’m here and so is my daughter. I’ll spend the first few hours of this bittersweet anniversary in the middle seat of a @delta redeye home from Phoenix… its quite apropos to be reminded that even discomfort is a blessing when you shouldn’t be alive to feel it.
Levi was able to meet one of his many superheroes yesterday at hospital.A big shoutout to MUSC Sean Jenkins children hospital in Charleston South Carolina the doctors and staff are amazing.
With a broken heart and tear filled eyes, there is nothing further that can be done for my sweet Levi.
My parents and I sat down with Dr Savage and nephrology earlier. His calcifications are inside of his heart, not on the outside like we thought. He is in full AMR, which is antibody mediated rejection. They mentioned possibly doing some hard hitting anti rejection meds, but it would be filtering out the bad antibodies in his blood and putting good ones in. But with the amount of volume it requires, they don’t believe Levi can withstand it, from a fluid standpoint. They mentioned placing a line to potentially give dialysis, but he no longer is eligible for a kidney and unable to receive another heart due to rejection. I can’t imagine putting him through all of this and having a percentage of it not even helping, or him being on the ventilator and not coming off.
I’m not sure what else to say, but just please pray. We are going to talk to palliative care this afternoon once Dallas gets to the hospital, but could possibly go home on comfort care Monday. I know God has the final say! I’m trying to hold onto my faith. None of this feels real. I’m living in my worst nightmare. 5 years just wasn’t enough, but I’m also thankful for the 5 years, through the good and the bad, I always tried to do what was best for my Levi because he deserved it. Just please continue to pray for him and pray for me, for peace during this time. And also pray for Dallas, I’m going to lose it when I see him. 💔