Bad to the bone

Thankfully, Larry Jr. is doing much better now. For the past week, I've been administering IV antibiotics at home through his line, and tomorrow is his final day of treatment. We are grateful for the care he received and relieved to see him improving.

A couple of weeks ago, Larry was hospitalized for nearly a week with a significant infection. For most people, a UTI may seem routine, but for medically complex patients like Larry, UTIs can become very serious very quickly and can progress to sepsis and organ failure if not treated aggressively.

As many of you know, Larry's medical history is incredibly complex. He has spent his entire life navigating multiple medical conditions, surgeries, specialists, and hospitalizations. As he transitions into adulthood, we continue to search for the best long-term medical home for his unique needs.

We are now exploring additional testing and specialty evaluations, potentially at Nationwide Children's Hospital in Columbus or Lurie Children's Hospital in Chicago. What makes these programs especially appealing is that they continue caring for patients with complex childhood conditions into adulthood and offer multidisciplinary clinics where multiple specialists work together as a team. For someone like Larry, whose care often involves many different specialties at once, that collaborative approach could be a tremendous benefit.

We are also investigating whether it is time for Larry to have a port placed. Obtaining IV access has become increasingly difficult over the last year. In fact, we were very fortunate that the team was able to place a midline for this round of home antibiotics. The line is not even positioned as far as they would ideally like, but thankfully it has held up long enough to complete treatment.

Over the last year, Larry has required multiple PICC lines, a ProLine, IV nutrition (TPN), frequent blood draws, hospitalizations, imaging studies, procedures, and now home IV antibiotics. Reliable vascular access is becoming harder and harder to obtain. When we arrive in the ER, valuable time can be lost while multiple attempts are made to gain access. For someone whose infections can escalate quickly, having reliable access could make a significant difference in both comfort and safety.

We are not making any decisions yet, but we are gathering information, consulting with his physicians, and exploring every option to make sure Larry receives the best possible care moving forward.

At 25 years old and after 118 surgeries, Larry continues to teach us what perseverance, courage, resilience, and faith look like every single day.

Thank you to everyone who has checked in, prayed, sent messages, offered help, and supported our family.

We are thankful that Larry is feeling better, getting stronger, and finishing his antibiotics tomorrow.