Since it’s been a while since our last update, we have a lot to cover. On Sunday, May 20, Grair came down with a fever. We had been home for about 5 days, and had strict instructions to call our pediatrician if such an event occurred. After consulting with the cardiologists and infectious disease doctors in Omaha, Dr. David sent us back to Children’s to be admitted. So, back to Omaha we went. For the next week, Grair continued to...

Over the past week, the site that I’ve used for the past 3 years to explore Grair’s medical journeys decided to stop working. I’m not sure what happened, but it’s been dead for about a week. I’ve attempted to get in touch with the site providers, but I haven’t had any luck. While the site looked promising and had some great features, the shutdown has finally spurred me to move to the meranda.org...

On Saturday night, Grair came down with a fever. After a few minutes the fever disappeared and didn’t return the rest of the evening. However, on Sunday evening the fever came back. After being checked out by Dr. David in Lincoln, Grair and I journeyed back up to Children’s. The infectious disease doctors want to monitor Grair to determine what’s causing the fevers. Given the amount and types of antibiotics Grair is on,...

Last night Grair finally made it home. After 12 days in the hospital, it feels great to be back in our comfortable surroundings! Our stay back at home doesn’t come without some extra baggage, though. We’re stocked full of strong antibiotics that we administer three times a day. Grair has a central line (essentially a more permanent IV) in his arm that connects through a vein into his bloodstream. With thorough cleaning and a...

Today’s transesophageal echocardiogram indicated Grair has a very small (3-4mm) vegetation growth inside his stent. It doesn’t appear to be limiting any flow, but does confirm endocarditis. Dr. Hamilton (our normal pediatric dentist) came to Children’s today to do the dental procedure. It turns out Grair’s teeth weren’t as bad as Dr. Hamilton predicted. He found no sign of infection, and didn’t have to...