A DAY IN JONATHAN’S LIFE

          A day in Jonathan’s life starts out with waking up around 6:45 am. Then I have to detach him from his gtube and always get him a drink of water. 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 Co. by 7:00 am. I drive his school bus so have to be there to get the bus ready and him on and pick other kids. Once he is off to school I have short break then I have another bus run then back to pick him up at 2:45 pm. 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. We get home around 4:00 pm. On Monday, Wednesday and Friday we have a nurse to help with full body dressing changes. On those days she arrives at 4:00 pm to  get all the dressing ready. She cuts and lays out everything we will need on the kitchen table. Once he is home 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 he sits on chair to change his bandages. Our nurse starts by taking off all the bandages on his legs, one then the other. 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 the legs. He also chooses to take off most of the special non adherent dressing we use on him. After taking off the bandages she pops any new blisters and covers any open areas. Then she goes to the belly and the arms, take off everything then redress. And the last thing I do is his hands. We are usually done by 6:30. 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 8:30 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 8:45 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 drama, 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.