Brisan and Parker Stults | Living with Niemann-Pick Type C

Posts Tagged ‘Gastronomy Tube’

Parker is just a funny kid! Below is a video we took while we were waiting on Dr. St. Peters to come into the room. He was being silly then as soon as I turned on the camera he stopped!

Overall March 24th is the date that they are going to due surgery. They aren't however going to do a fundo which is relieving for the time being. Now after the GT if he is aspirating or having things come back up, then it will validate if he is really having reflux. This is a completely safe guard (GT) since he loves to eat but he just isn't chewing his food like he needs to. I know we just hate seeing “stinky” or any of the boys go through these things.

During that surgery they will put a line in underneath his collar bone since Parker and Brisan both have had weekly infusions since November 09′. They are getting stuck way too much! This will make life a bit easier for everyone involved.

On another note please pray for Jonathan Fletcher of Independence, MO. He is a 5 year boy who is near his time due to a cancerous tumor inside the base of his brain stem. Pray that God takes away his pain and fears. Even more importantly pray for his parents. We don't want to imagine those feelings anytime soon.

Tomorrow we have an appointment with Dr. St. Peters at Children's Mercy Hospital to go over whether or not Parker will get a G-Tube like Brisan has. They say it is better to be proactive when they don't really need it than before they do. The poor little man has some weird eating habits. I've nicknamed him “Hoover” because not even that vacuum could out dual Parker in an eating contest! He isn't chewing his food. Basically just inhaling and swallowing.

In neurological disorders, especially like Niemann-Pick Type C (NP-C), they have difficulty swallowing which leads to aspiration, choking, and potential prolonged meal times (can you say stressful for the family!). Sometimes a person with a neurological disease that slowly takes these rights away from us, may dread eating at all. I highly doubt Parker is dreading eating but we are glad that he still shows strong interest in it!

Unlike Brisan, Parker will take his medications orally. I remember last year when we went through this with Brisan and how after surgery things seemed to get worse for him. I know that I don't want to see that for Parker. I also personally worry that everything is so crowded and enlarged in his stomach region that if we do this surgery how will this play into things? I mean this is a pretty big deal and I'm not really ready to have two of them with one!I know they are brothers but they don't need to have two of the same “toy”.

Please keep Parker and our family in your prayers. We truly only get through the days with continued support emotionally from all types of loving individuals such as yourself. Here is a diagram of what this whole thing is!

To learn more about a Gastronomy Tube please read more here.