When my son Jackson was 4 months post-transplant, caused by the effects of Alagille syndrome (ALGS) on his liver, our family got hit with a stomach bug. It started with his older sister and brother. We tried to separate them from each other as much as possible, but sometimes that does not always work when you live in the same house. Especially when kids are little and do not understand.
I was worried about how the virus could affect him as it was his first real virus post-transplant. I made sure to constantly wash my hands in between each interaction with every single kid.
My mother-in-law ended up taking Jackson for the day to spend time with him and get him out of the house and away from the germs. On the trip back from her house to bring him home, she called me and told me he had started vomiting. I was officially in panic mode. I knew the rules: keep him hydrated and push fluids, monitor wet diapers, and call the team if any fever was above 100.4 °F.
He vomited a few additional times throughout the evening, and I offered popsicles and juice of any kind to get fluids in him. Eventually, he stopped throwing up but was very lethargic. He did not have a wet diaper for about 6 hours.
Read about experimental therapies for ALGS
Based on the fact that he was freshly post-transplant and there was no urine output, I called the on-call team. They suggested bringing him in right away and having him evaluated. At the time, the flu was rampant and COVID was spreading.
As soon as we got to the hospital, they started the evaluation. They ran viral testing and started an IV of fluids because Jackson was not urinating. He was doing great, the fluids seemed to be helping, and he was eating all the popsicles he could get to help with the hydration. We thought we would be able to go home as soon as the bag of fluids was finished, but he spiked a fever over 100.4 °F, and his lab work returned showing that he had a decrease in his neutrophils.
They decided to admit us for monitoring and to run some IV antibiotics. We spent another night in the hospital for a total of 2 nights for the norovirus and astrovirus. Jackson’s siblings were able to handle and fight off these viruses, but they took a toll a toll on him and landed him a nice “staycation” at the hospital.
Thankfully, Jackson recovered quickly, and we were able to return home fairly quickly. Lab work showed his liver was managing the virus well, and there were no signs of rejection. Since this episode, we have been hospital admission free for more than 2 years and remain thankful for every day.