Dr. Hammel, the surgeon, just stopped by to give us an update. While he hasn’t begun his process yet, he has been working with the other cardiologists to take some pictures of Grair’s heart and explore as much as possible before operating. Yesterday, there was concern that the pulmonary arteries had become enlarged and they would need adjusting. Unfortunately, the more adjusting, the greater risks for complications. The initial...

During Grair’s pre-op appointment this afternoon, Grair had some unexpected visitors. It turns out the Arizona Baseball team—in-between thumping UCLA and potentially competing against UCLA again on Thursday—made a visit to Children’s Hospital! Grair was pretty excited to see an entire baseball team. Cael and Blythe were up as well, and they got to meet the team also (the tweet mentions Andrew, but that’s Grair, Cael and...

Believe it or not, things have been calm since out last post. Grair has done exceptionally well given his new routine of daily IV antibiotics. He’s enjoyed being able to run outside and enjoy the weather (even the hot weather). Last week, Melissa and Grair had an appointment with Dr. Fletcher, Grair’s cardiologist. Nothing major to report, other than it is definitely time for the repair. Dr. Fletcher described Grair’s heart...

During my last post, I mentioned how our intentions were to stay up at Children’s until the surgery on June 20. The concern was Grair’s daily fevers needed monitored, as did his kidney functions and other “metrics” used to track blood counts, infections and other functions. Perhaps it was the act of posting to the blog, or that the doctors found the correct medicinal cocktail, but somehow Grair fought through the ailments...

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,...