For this week’s blog update we wanted to share some information on how kidney disease and being on dialysis can affect a child’s eating.

Rylie and Justin knew before Jones was even born that he would have some kind of feeding tube. Kidney disease in general makes a majority of children very nauseous because of electrolyte imbalances, and when adding peritoneal dialysis (the kind of dialysis that Jones does 10 hours each night at home), it makes appetite and desire to eat very difficult. Oral aversions are common, and it has been the goal of Rylie and Justin to do everything they could to avoid an aversion forming for Jones.

Peritoneal dialysis filters Jones’s body by adding a fluid called dialysate to his abdomen, letting the fluid dwell for a certain amount of time to pull the waste out, and then drains all via one catheter located in his abdomen. The sheer volume of fluid that is added to his abdomen each cycle puts pressure on his stomach, therefore making decreased appetite a very real reality. Jones also “long dwells” during the day with 120 mL of fluid in his abdomen to pull out the bigger waste products that are needing to be filtered from his body.

Jones has made great strides since coming home from the NICU, as when Rylie and Justin took him home, he was on continuous feeds 24 hours a day through a GJ tube, with his feeds going straight to his jejunum, a portion of his small intestine and therefore bypassing his stomach. Jones has worked so hard to transition to a G tube, meaning all his feeds go into his stomach, to prepare his body for one day eating most, if not all, his food orally. He also now does bolus feeds during the day, meaning he takes in larger volumes over a shorter time, and allows him time to be free of his feeding pump and do whatever his heart desires!

The ability for Jones to transition to a G tube and tolerate it has brought so much relief to his parents as feeding tubes have to frequently be changed, and with the GJ tube he would have to go to the OR and be placed under anesthesia to be exchanged. Now with his G tube, it is something Jones’ parents were taught how to complete and is able to be exchanged at home!

Jones’s parents take him to Speech Therapy multiple times a month to work on his feeding, and Jones does show interest in and enjoys eating certain foods, like purees and Greek yogurt. Though he does pleasure feeding multiple times a day, he only takes in a few teaspoons at a time, but this is a huge improvement from August when these oral feedings began!

Rylie and Justin are so proud of how willing Jones is to try anything, and they are very hopeful that after a transplant, Jones will want to eat much more orally, as this very commonly happens!

Please continue to share sweet Jones’ COTA page and his story, it means the world to all that love him!

Happy Kidney Awareness Month!