Im Kayla Jones and this is for my son Patrick Casterlin. It all started when Patrick was born at 34 weeks and was having problems breathing and with his heart. We were living in Duluth, MN and the hospitals up there couldn't help him and so they sent him down to Minneapolis Children's Hospital to keep him alive. He needed a shunt put in at 2 weeks old and turned into a emergency open heart surgery. Well after a couple months being in the hospital... My chunky monkey was able to be taken home. Then after that we had to bring him into the hospital cause he wasn't eating well and was aspirating on his food... Got a G button placed to feed him through his belly. Then a few months later he needed another open heart surgery cause he was big enough for the full repair on his Complete AV Canal Defect and his Tetrology of Fallot. After that surgery his heart Went into a heart block (flatlined cause his heart can't beat on his own) and needed a pacemaker, so they went back in and placed the pacemaker in to help him keep up while he was sleeping cause his heart would slow down when he is sleeping. After being in the hospital for a couple months he was able to go home again. After a while he decided that he was eating well enough to pull out his own G button. And he was fine for a year or so and had to go in again for another open heart surgery cause his pulmonary valve was shrinking again and they had to fix that. Well as soon as they we're getting ready to let us go they noticed his chest got a staff infection and they had to keep the wound open and clean it a lot to let it heal from the inside out before sending us home. Well now we have been noticing Patrick sleeping a lot and a lot and no matter what he is doing he will fall asleep right there. We took him in and they noticed some tumors growing in his lungs and one above his spleen. Got tests done and it was nothing cancerous but it's not going away. The cardiologist looked at his heart a couple times to see why Patrick is so sleepy and he saw his heart valves doing somethings they didn't like. So having the 5th open heart surgery to fix that and they found out his pacemaker had grown an infection. They don't know for a fact if that's what caused the tumors or not but they had to take out the pacemaker and clean that area out. He had an external pacer and they were healing the open wound and will take 3 to 4 days to do so and then we will be looking at placing another pacer in but an adult one in his chest to help with the heart block. Spent his 7th birthday and the first month of school in the hospital and at home to make sure his wounds healed. He has the cutest extra chromosome that makes him extra special in our family and we can not live without him in our lives. He is on alot of meds and keeps getting more added. He has a low immune system and is always getting sick and has a CPAP machine to help him breath at night so that when he stops breathing on his own at night, it wont do more damage to his heart.
Any help is appreciated as he will have to continue getting open heart surgeries as he grows. It is hard to have a kid in the hospital, they want mommy and daddy but Patricks birth father passed away. My son is a runner and doesnt quite understand things at first and people can hardly understand him. He is like a 5 year old but 10. He is always happy but people still dont know how to treat him or handle him. The only people who know how to take care of him are me and my fiance. We ask for help during these times as they can be hard to go back and forth to the hospital and trying to eat when you see your son suffering. He may not be important to everyone else in this world but he is important to us.
Thank you for your help!!!