We knew blood pressure was important; Max had needed medication for a while pre-transplant. But post-transplant, although it is monitored in clinic with normal results, we haven’t paid much attention to its importance. That is, until the first lROC Learning Session that I attended in December 2016. The statistics shocked me to my core. After sharing the BP presentation with my husband, we became determined to figure out what we can do now to help Max avoid this probability.
While we were still inpatient after the transplant, I remember being encouraged to feed Max cheetos and other strong flavored 'kid friendly' foods to wake up his taste buds. Although we resisted feeding him the cheetos, later during follow-up visits, it was routinely suggested to give him mac and cheese when we would ask for food ideas. We had heard good things about the blended diet (while still on the g-tube) and wanted to encourage as many ‘whole foods’ as possible. However, as we worked tirelessly to help him eat orally and move off of his reliance on his g-tube, we thought that maybe it was just important to get him to eat orally. We would worry about his diet later.
Thus, McDonald’s cheeseburger happy meals with fries became his favorite food, with chicken fingers, mac and cheese and pizza not far behind. Goldfish, chips and pretzels were favorite snack items. Everyone was pleased that Max was such a good eater.
In working with other Community Engagement Workgroup parents whose children are much further along post-transplant, blood pressure education and nutrition became common themes of discussion. Most of the parents were not aware that blood pressure was as important as it is until it was too late (i.e. needed medication). Secondly, they now needed to change the diets of their children whose favorite foods were high in sodium. So now we pay attention to how much sodium is in the foods that we are feeding Max. When cooking, the salt portions of recipes are cut in half. Macaroni and cheese is no longer Kraft but homemade. Gold fish are a special treat rather than a daily snack. We also talked to his pre-school teachers regarding snack time in order that they can offer him fruit and other low sodium options. And we have a renewed focus to encourage a variety of creative vegetable options.