Amy Jo Gardner is calling for any and all help. Please see her blog post below. If you have any ideas — let her know or post a comment below.
AMY JO’s BLOG HERE
PLEASE HELP SAVE MY SON!!
Looking for any suggestions that may work to save my son.
He is 3 months old currently in ICU. He can not put on weight due to his av canel defect and is at risk for heart surgery due to his nutritional state. We currently have him on 27 cal formula with oil through a feeding tube directly to his intestine. He is batteling a infection from his central line or the vent we are not sure. My team of physicans don’t know what more to try to make him stronger. I met with one dr today that says he needs his heart repaired asap but the risks are to great that we might lose him. I can’t bear the thought of that, Now I am fighting for my son, I have to save him some how but I don’t know where to turn too? PLEASE If anyone can help me I would be forever greatful.
judy lynn rysdam
I know how frighten you must be feeling my son Adrian had to have his heart repair too when he was 5 months old. He is going to be eight years old next month no heart medicine anymore. i don’t know where you live but we are from Iowa and Adrian had his heart surgery done at the uni hosptials and clinics in Iowa city. i don’t know what to tell you except to keep praying as I will and i will spread the word that you are in need of pray at my church keep feeding him and loving him and pray It worked for me And i know that the great I am is bigger that this it is hard but have faITH AND REMEMBER JESUS IS RIGHT THERE WITH YOU PLEASE KEEP ME IN FORM aDRIANS MOM jUDY
Shawntae
We faced the exact same thing when my daughter was born. We went to Childrens Hospital in Omaha NE for the surgery. It is a very frightful situation. She had the same heart condition and couldn’t put on the weight, they had her on 4 heart meds,Capaton(not the right spelling, I can’t remember the other 3 one was for the fluid build up I belive it started with a ‘d’. They also had her on extra caloric intake powder to gain weight, because her heart would beat so fast that it burned off any calories she took in. They wanted to have the open heart surgery but she had to be at least 8 pounds in order to have a fighting chance at life. She went into congestive heart failure at the age of 6 weeks. Finally at the age of 4 months she weighed 8lbs and 4 ounces and they did the surgery the next day and she came through with flying colors. There are pediatric cardiologist that preform this surgery in Omaha, Iowa and I believe Minnesota. They tend to be the experts on childrens heart conditions. Luckily we live in Lincoln and could go to Omaha only 50 miles away. I will keep you and your little one in my prayers. It is so frightening to say the least to go through this, just keep praying and holding onto your faith. My daughter is a teen now and is doing fine with her heart and everything. God pulled us through and what He did for me He will do for you. Please keep me updated with your son. God Bless you and yours. Mary, Shawntae’s mom.
Shawntae
I had forgotten to add that the food they are giving him in the feeding tube will help lots on getting weight on. When the powder calories added to her formula didn’t work my daughter had to have the feeding tube as well and it did seem to help put on the weight much faster then the powder stuff. I wish I could be there with you for support, no one understands just how scary this is unless you had gone through it yourself. Keeping him in prayer, God Bless.
Katia
We were in your same position 8 yrs ago also. Our daughter was exactly the same age as your son, on numerous heart medications, had failure to thrive, etc… Initially they told us that she wouldn’t need surgery until she was 1 yr. or 20lbs. At 3 1/2 months they could not wait any longer. We got her weight up to 12 lbs. and then went ahead with the the AV canal surgery. I will trust and pray that your family is as fortunate as ours because today she is 8 years old, off all heart medications, and doing very well. Yours son sounds like a great little fighter with a lot of strength and support to get through this. Please contact me at some point because I have a little gift I would like to give you from our website that represents parents of children with Down syndrome that have heart conditions like ours. Best wishes.
Katia
downsyndromefootprint.org
Jenny D
I’m not sure where you live but my daughter has a great cardio doctor and he may be able to help you, God is always with you and our family will be praying for yours.
jen.dilbeck@yahoo.com