Fluid is a big deal at our house. Since E has a kidney transplant, part of taking care of her transplant is making sure that her kidney gets enough fluid each day to continue working at optimal levels. This means that every six months, E’s doctors determine how much fluid she should consume each day based on her height, weight, and age to maintain the health of her transplant. Not an overly big deal, right? Well, it’s not a big deal for an adult. With an adult patient, doctors and nurses can explain why it’s necessary to drink a lot each day. It’s different with a kiddo though, and if you’re 16 months old when you get your transplant, it’s even harder to understand why everyone is making you drink all the time.

E was still on a feeding pump when she received her transplant, so meeting her fluid goal each day wasn’t hard at first. But as she got older and started eating and drinking more orally, we sometimes struggled to find the right balance of eating and drinking. Sometimes her feeding tube did a lot of the work since we simply couldn’t explain to a toddler the importance of drinking. Sometimes we used her feeding tube to give fluid because we battled puking from overloading E’s stomach. Then we really got honed in on a daily schedule for fluid intake that seemed to help most days. We were able to wean E off her feeding pump and onto three to four gravity boluses per day, supplemented by whatever we could give her in a sippy cup. Gradually, as her drinking skills grew (E had to relearn how to eat and drink after transplant), we reduced her boluses and increased what we gave her in a sippy cup. Now, at five-and-a-half, E is to the point that she can meet her fluid goal just by drinking some days. Most days though, she gets one small gravity bolus in the morning to start her trek to the day’s goal, and then she eats and drinks her way to meet her goal by the end of the day.

Even though E usually makes her fluid goal every day, it is still tough for all of us to make sure she reaches it. Some days it’s like pulling teeth to get her to drink, and a running tally of her fluid is always at the back of my mind. Her current daily goal is to get 1800 milliliters of fluid, or 1.8 liters. A five year-old doesn’t want to sit and drink almost two liter bottles of fluid every day! They want to get up and play, and they don’t understand why they need to drink all the time. E knows that she needs to drink to take care of her kidney because that’s what we’ve ingrained in her, but a little kid doesn’t really understand why all that fluid is necessary.

Our current method to meet E’s fluid goal each day is to start off with a bolus, as I already mentioned. Then we fill up a water bottle with 700 milliliters of water that she must finish before the day is done. We’ve found that this Bottled Joy water bottle is perfect for her because it has two measures of fluid, a straw, and a handle. So we can always see exactly how much she’s drunk and we can easily tell her how much more she needs to drink at any given time. The handle makes it convenient for her to carry the bottle herself. We have a white board in our kitchen where we record her bolus amount, how much water we put into her water bottle each time, and how much milk or juice she gets at meals. We also keep track of fluid-based foods she eats like jello, yogurt, pudding, applesauce, ice cream, and popsicles. Most often, we record her milk, juice, and other fluids using a digital kitchen scale. When a scale isn’t available for liquids, we use measuring cups. Every time we go on a trip, we take a scale with us and we always try to have snacks or bottles that have an exact measurement on them so we can record how much fluid E gets. On summer days, we try to give E extra fluid to avoid dehydration and we keep her inside at the hottest parts of the day. We know that on any given day, if E doesn’t meet her fluid goal and gets dehydrated, her kidney health could be in jeopardy and IV fluids are the next course of action in order to prevent rejection.

Water bottles with straws work well for us, but E still needs motivation and constant reminders to drink each day. Last year, we instituted a sticker chart for E’s fluid goal. Both E and her sister M like stickers a lot right now, so E and I designed a four-week daily chart for her. If she met her fluid goal each day, she got to choose a sticker to put on her sticker chart. Then if she filled all or most of her sticker chart, she got a prize – like ice cream and cheese curds from one of her favorite fast-food restaurants. The chart worked great for about eight months, and then fell by the wayside with the busyness of the Christmas holiday season. I’m not sure if we’ll go back to the chart in this new year. Right now I’m more concerned with preventing E from biting the straws on her water bottles so we can keep using the bottles. Since learning to drink again, she’s had a problem with biting when she drinks (her sucking mechanism didn’t resurface like we thought it would). Straws seemed to be a good way to teach her how to suck again and allowed her to drink more at a time than if we required her to just drink out of an open cup. But she’s bitten holes in her sippy cup lids and the silicone bite guards of her water bottle straws. Recently, she bit one bite guard in half! She does drink out of open faced cups at mealtimes, but we feel a water bottle is the best solution for nighttime, trips, appointments, and carrying around during the day. With a water bottle we don’t have to worry about spills or filling it as often. If she could stop biting, we could get her different water bottles with bite guards that aren’t so rigid. We haven’t found a recipe for success to get her to stop biting though.

E proudly displaying her first drinking chart. We sent this picture to her transplant nurse coordinator.

My hope is that someday E will get to the point where she’ll know she needs to drink a set amount each hour and that she’ll just do it. Maybe that will be with the help of a smart-watch that alerts her to drink every half hour, or maybe that will be with the help of a straw water-bottle that has different times marked on its side. In the meantime, we’ll keep watching her fluid intake like hawks, constantly reminding/encouraging her to drink, and hopefully find a way to help her keep her water bottles in good shape.