On Tuesdays and Thursdays at 9am Jackson has school. His schedule changes some on these days. He is a homebound Kindergartener with Shelby County Schools. His teacher Sara comes to the home. She gets Jackson to smile and engaged by playing music, singing, and reading books to him. She also works with him with his switch. We are thinking of moving his time to the afternoon so we don't run into the sleepiness of side effects.
2:30pm On Wednesdays, Jackson has PT from the school. This session lasts about 30min. This usually will make him very tired. He will want to rest.
6:30 Jackson is given 4ml of Reglan again after he is dried off and dressed. His hair is combed and his gtube site is dressed. We use 2x2 surgical sponge to dress his site. It is secured with Medipore tape. Jackson is allergic to the cheap paper tape. The 2x2 surgical sponge absorbs any leakage that may irritate the site. His site is checked at each diaper change for leakage or wetness. If wetness is found, the dressing must be changed. Wetness will cause skin irritation. Jackson has been blessed to not have any skin issues associated with his tube. I know there are a lot of kids that have complications.
This is just an ideal day. This is just an example of how his day should go when it is not complicated by doctor appointments, diarrhea, leaking diapers, illness or pain. He is on oxygen every minute of the day for support if he drops his SATS (oxygen saturation levels). He drops his SATS sometimes when he has a seizures. He especially does this while sleeping. He also has to have his sheets changed weekly, medicine givers washed daily, suction machine cleaned daily, enteral feeding extension changed weekly, enteral feeding syringe changed weekly, oxygen tubing and suction tubing changed biweekly. I am sure I have left something out. So now you know what I do all day. Some people that meet us say, "How do you do it?" I think the more important question is "How can I not take care of him?" You don't have a choice when God gives you a gift like Jackson.