It’s 6:45am and his mom is walking into his room, speaking softly as she rouses him. It’s time for his weekly doctor checkup and infusions and they have a long day ahead. She dresses him brushes his teeth and gathers the last-minute items. 

But first- time for a round of medications. He’s currently prescribed 12 different medications, 11 of which he will take at precisely 7am. As he cannot drink his morning milk for an hour after he takes his meds, he will have to enjoy a breakfast bottle on the way to the doctors office. 

By 7:15, the car is loaded with his diaper bag, medication sheets and checklists, toys, snacks, shoes and his journal that tracks his blood pressure, food and milk intake, stools, meds and other health information. Time to hit the road; the trip to Dallas takes roughly an hour and fifteen minutes, more when there is traffic. And there is ALWAYS traffic. At 7:30am, his mom passes back his bottle of milk for him to drink. 

They make it to the doctor’s office just before 9am. His mom painstakingly unloads the car with all of the supplies she brought. Kaiden is too little to wear a mask so his stroller has been outfitted with a special plastic cover to keep germs at bay. They make their way to the pediatric department and check in and get shown to a room. A nurse comes and takes his vitals and draws his blood just before his next round of medications. 

At precisely 9am, Kaiden receives his anti-rejection medication, the main medicine that keeps his body from attacking his new liver. 

While they wait for the doctor, his mom and the staff try to entertain him with sanitized toys and games. His mom pumps milk for his newborn brother and offers him a snack but he declines. The doctor is running a little late today and keeping an active nineteen-month-old entertained is hard enough but the real challege is keeping him distracted from pulling out his IV. Finally, the doctor arrives. 

It’s a mixed bag of news. His white blood cell count has finally climbed back up so that he can resume one of his medications, but he will need to have transfusions every four weeks to keep his count where it needs to be.

They’re also monitoring levels of Epstein Barr virus they’ve detected in his blood. The levels have increased but they’re not seeing any evidence of a reaction from his suppressed immune system or rejection of the liver. The doctor lays out a plan for further investigation and possible treatment if his levels keep climbing but for now, they’ll see how his body responds to a small change of dosage of his medication. 

Two hours after they arrived at the doctors office, Kaiden and his mom make their way down to the pharmacy to pick up the changed medication regimen. Kaiden has been patient thus far but the additional 45 minutes of having to sit in his shielded stroller is testing his limits. 

It’s now approaching noon and time to start the long trip back home. Kaiden hasn’t had a real opportunity to run around and express his energetic self much, and yet the meds and long morning has him exhausted. He snoozes in his carseat as they make their way back home. 

Kaiden hasn’t eaten anything yet today, having refused all the snacks his mom had packed. She drives through Chic-fil-A on the way home for a meal Kaiden is less likely to turn down. Once they get home, he’s given another medication that conflicts with milk so his mom sets down his chicken tenders and fries and prays he finds his appetite. 

Finally, he’s able to run around in the safety of his own home as he plays with his baby brother and mom. 

At 3pm, its time for more food-restricted meds and at 3:30, he lays down for a restorative nap. 

He’s woken up at 5:30pm for another round of meds, served with a glass of diluted orange juice. It was tricky to find a brand that didn’t also include grapefruit juice. He’s offered a small snack but he just doesn’t have much interest in food. 

At 6:30, the family sits down for dinner. Kaiden picks at his dinner but accepts the bottle of milk he’s offered. After dinner, it’s time for some fun outside in the backyard. Some days they go on a walk, staying carefully distanced from everyone else. 

As the sun sets, it’s time to get ready for bed. They had time for a full bath tonight as opposed to a quick shared shower with mom.

At 9pm, he gets 5 medications, including his anti-rejection meds. He’s offered more food and another bottle of milk before he brushes his teeth and gets read a story. 

Finally, just before he’s laid down to sleep, one last medication at 10pm.