Detrayan was born on June 15, 2002. He was born with an omphalacele (a hole in his abdomen). He was born at 28 weeks. The hole in his abdomen was just the beginning of his problems. A few hours after being born he goes straight into surgery to close the hole in his stomach. This is the first of the many surgeries. He seems to be doing ok but as the days go by there is one complication after another due to prematurity and a syndrome we did know he had at the time. This was the first time the Doctors there at the Children’s Hospital had dealt with this not yet recognized syndrome. They called in the genetics department (one of the many specialist called in) to see what syndrome he had. The genetic Dr told us that our son had a syndrome called Beckwith-Wiedemann. It was the reason he had large organs and tongue plus an ear tag. We were glad to find out what my son had but we also had never heard of BWS. As the weeks go by Detrayan develops a grade 3 and 4 brain bleed. The Dr’s told us it was a wait and see thing. They wanted to wait and see if it would resolve itself or continue to worsen. It worsened and they end up putting a outside shunt in. He kept it for a month and it began to leak so the dr’s put in a VAD so the nurses could drain it manually.  Next the Dr’s told us that Detrayan’s liver developed a cyst on it. The cyst was not cancer. The Dr’s want to start feeds on Detrayan so they decide to put in a g-button because he was still on the ventilator. From birth he was on the ventilator. He was not able to breath fast enough on his on.  The surgeon put in the g-button and removed the cyst. While trying to feed Detrayan they encounter another problem, he was not digesting his food normally. The Dr’s call in another specialist, a GI Dr. She diagnosed him as having dismoetility (extremely slow moving intestine). He had to be put on special formula so that he could process it. As time goes on the Dr’s try to see if they can take him off the ventilator but each attempt fails so they decide to give him a trach. That was something else I needed more information about, I from a small town the only trach people I saw were people with holes in there neck and a voice box to lay over the top to speak to you. Now mind you, everything is new to me, the BWS and now a trach. So I make a several trips to library to look up everything I could find about BWS, trach, infant brain bleeds, CP, and dismoetility. I found a lot of information on each. The librarian was very helpful. Next we get some more news that his ventricles are not connected, and he is going to have to have another surgery to connect them. How we found out about the ventricles was, one day I was sitting with Detrayan and talking to him when he had a seizure. The Neurologist said it was because of a bleed around the ventricles and that the one side was drained and the other was not. So, he gets the surgery done and things start to look better. Next thing was getting a VP shunt put in. The Dr’s were trying to figure out where to put it. He did not for a long time have room to put it in his abdomen, so they put the shunt in to his heart. That shunt did not last long because of him growing, so the Dr’s revise it and find a spot in his abdomen. During this time we find out that Detrayan has a hearing problem. He failed his ABR. The audiologist recommends that we put tubes in his ear to get the fluid build up out. He ended up with sever to profound hearing loss. Also, during that time Detrayan gets moved to a home ventilator and does well. We get vent trained so that my sweet little man can come home. We learned a lot of stuff and terms along the way. It was all worth it. He is home. He also eventually gets off the ventilator sooner than we expected. Almost a year after being released from the hospital Detrayan gets pneumonia and had to go back to the hospital for 3 long months in 2004. Those three months were hard. I have a 7 yr old as well and she missed mommy a lot during this time and when Detrayan had to go back to the hospital it was as if everything was happening all over again. We made it and he is progressing well. He is developmentally delayed. He is at the 11 to 15 month age. He is getting there. He is doing so much more now. He has started school and is loving it. He gets so excited in new environments. He also learned how to walk. We were so excited. We did not know when he would do it. With each new thing he does I will add more the story. Until the next new thing. Bye-Bye

Trescina

December 24, 2005