Tyson was born on Oct.7 2008. We did not know until after he was born that he had down syndrome. And of course it was the worst news ever...so I thought. His first year was a tough one for him. At just three weeks old he was getting blood work and biopsies done because he was still jaundice and they knew it was associated with the liver. He was diagnosed with cholestasis(fewer bile ducts than normal) He needed to take medication for it and have routine blood work done. At the same time that this was going on his belly got real distended one day and I rushed him to the er. They diagnosed him with Hirschprung's disease(enlargement of the colon caused by bowel obstruction) and surgery was needed right away. At seven weeks old he had the surgery and needed a colostomy. They wanted him to gain more weight before doing the full surgery and remove the bad part of the colon. So at seven months old(May 2009) he had the 5hr surgery and everything went well.
In Sept he got pneumonia and needed to be hospitilized for it. He got diarrhea after that and at first I assumed it was from the antibiotics he had been on for pneumonia. I called the doctor and they felt they didn't need to see him and this went on for a month. He stopped eating and got very lethargic. He went back into the hospital and found he had rotavirus(basically it is diarrhea) They sent him home even though he wasn't eating and had a fever. I didn't feel good about him going home. Needless to say we were back in the hospital two days later because he still wasn't eating and was lethargic.(He should have never gone home in the first place) And that is where the real nightmare began. For four days they fed him thru an nj tube which made him very uncomfortable. The doctors were trying to tell me he was getting better. He wasn't. On day four my doctor told me they took blood and his levels were way off but she thought it was because they took it from his heel and that they would check it the next day. A girl I went to school with worked as a nurse on the floor and I saw her quite a bit his first year because of him being in and out of the hospital so much. She tried to tell the doctor he wasn't looking any better so she took it upon herself, went over the doctor's orders and got a PICU nurse to come in and take blood from the vein in his forehead. Awhile later the nurse I knew came back and told me his levels were so far off and they needed to rush him to the PICU. I'll never forget that evening as much as I want to. They did not know if he was going to make it because he was severely dehydrated. How do you get dehydrated IN the hospital??? All of his levels were so far down he ended up needing to get a blood transfusion. He ended up in the PICU for three weeks all because of the dehydration that occurred in the hospital. I owe Tyson's life to the nurse that knew what she was doing and chose not to listen to the doctors. My little guy had to endure so much pain and suffering that was unnecessary. He got a scalded staph infection while in there. They pretty well assumed his rotavirus turned into a bacterial infection that could have easily been treated with antibiotics but the dehydration landed him in the PICU. Even the PICU doctor told me there was no way Tyson should have ever been in the condition he was in. Stupidity almost cost my son's life. I think abot it a lot and now everytime he gets even a little sick I am rushing him to the doctor because of this bad experience.
He is a fighter and is doing awesome. He bounced back quickly-started walking four months after getting out of the hospital(at 17 months) and is so determined. I love him so much!
