A DAY IN JONATHAN’S LIFE

          A day in Jonathan’s life starts out with waking up around 7:00 am. Then I have to detach him from his gtube and always get him a drink of water. Most mornings his stomach is still pretty full from his tube feeding so when he drinks the water in the morning it makes him throw up. After he is finally out of bed I get him undressed which is difficult most mornings due to his pj’s usually get stuck to him in at least one place, either his hip area or his shoulders. After he is undressed we look for any obvious blisters and cover any open areas to prevent his clothes from sticking to him. Jonathan still wears a goodnight at night due to the feeding tube he still has accidents at night, which usually gets on some of his stomach dressings so I do my best to clean him up and change bandages in time to get the bus at 7:45 am. Once he is on the bus it is off to school. On some days I work as a substitute paraprofessional. While Jonathan is at school he is expected to participate like all the other children. He is pushed to walk as much as possible but when he finally gets tired he does have a wheel chair that he can use to help him out. Once school ends he is back on the bus and home by 2:45 pm. On Monday, Wednesday and Friday we have a nurse to help with full body dressing changes. On those days she arrives at 2:30pm to help me get all the dressing ready. We cut and lay out everything we will need on the kitchen table. Once he is off the bus and in the house he likes to relax as long as possible sometimes it takes us an hour to get him into the tub. The tub is filled with water and Sulfamylon powder to help control his pseudomonas. After arguing with him for what seems like forever we finally get him in the tub usually by 4:00 pm. He usually screams when first getting into the tub as the water does sting at first. He goes into the tub with all his bandages on so the water can help to prevent sticking. He soaks in the tub for about 20 minutes then he gets out and goes to the kitchen where I have a stool to help me get him on the kitchen table (we use the table so he is up higher every other place we have tried has really hurt my back and we cannot afford to put on a special room to do his dressing with a proper dressing table). Our nurse and I start by taking off all the bandages on his back and belly. Jonathan likes to have as much control of his body as possible so we allow him to choose where we will start which is usually his belly to help warm him up, he also chooses to take off most of the special non adherent dressing we use on him. After taking off the bandages we pop any new blisters and cover any open areas. Then we go to the arms, I do one side the nurse does the other, same routine as the belly take off everything then redress. After the arms we do his legs and feet. And the last thing I do is his hands. We are usually done by 6:00. During his dressing we do go through a lot of yelling and going really slow as Jonathan like to do everything as slow as possible incase something is stuck, this is a very long process and does drain us all. After we are done it is homework and to make dinner. Jonathan does not eat he only drinks water due to having a very bad oral aversion and due to pain from the blistering he gets in his mouth and throat. Once homework is done he gets a chance to relax and play either a video game or watch TV. Bedtime is at 8:00 pm. I put his P J’s on then I start to get his feeding tube and medication ready. I have to hook him up no later than 8:30 or he will not get the full amount of his formula during the night. I measure several different medications in syringes from medication to help him sleep to medication that help him with itching. Along with all this I do for him, I am helping my daughter his older sister Ashley with her homework, showering and getting ready for bed. Once all his medication are given and his feeding tube is hooked up we sometimes have time to read a story. Then finally I get to do the dishes and get lunches ready for the next day by 10:00 pm I finally can relax and get ready for bed. This is on a dressing day sometimes along with dressings is getting my daughter to girl scouts, chorus or sports. On days when we don’t have a full body dressing change I still have to check for blisters and change bandages that get dirty. This is how most of Jonathan's days go.