The Good

(I added some more picture to our CaringBridge site here:https://www.caringbridge.org/visit/peterhernandez/journal/view/id/646d6e94c2b6a232d3cf8e91)

Whew, it has been a minute since I’ve updated here! That is mostly because Peter has been doing so well and been healthy and rejection-free. Praise God! Peter continues to get labs locally every month and comes to KC for clinic appointments  every 3 months. He continues to rock his new heart. Peter turns 5 years old in August. He has completed his second year of preschool and will go for a third year before heading off to kindergarten. He loves Paw Patrol, Spidey and his Amazing Friends, Fire Buds, and Disney Cars. Most days he plays with some combination of these toys all day long and sometimes gets to watch an episode or two of the shows. As the third child, the rest of his time is mostly spent waiting on his siblings.

 

Aurora earned her pointe shoes in ballet this year! She is going into seventh grade. Michael started Tae Kwon Do and earned his orange-white belt recently! He will be in third grade in the fall. Both of them are involved with 4H. Michael and Peter (mostly) love playing together. They play a lot of Transformers and Star Wars. The kids still love listening to Adventures in Odyssey. Even Peter has his favorite episodes now.

Also, Christopher earned his bachelor’s degree in organizational management this past October, fulfilling his longtime dream of finishing college.

 

For spring break this year we took a family trip to Branson with Christopher’s parents. It was a fun trip! We visited Silver Dollar City, Titanic Museum, Celebrity Car Museum, zip lines, and an escape room,not to mention the family movie nights and hanging out together.

 

The Bad

So the bad recently hasn’t been all that bad in the grand scheme of things. This winter our household went through several rounds of strep.  In April Peter started having some isolated fevers that lasted for a few hours, just here and there. When they became more frequent and higher, we visited our local family doctor and he had a few rounds of antibiotics and a chest X-ray, thinking we were battling pneumonia. (Which was the right call with the info we had—we love our local doctor!) When the fevers came back while on antibiotics, he spent four days in Kansas City on IV antibiotics. Unfortunately, this meant that he and I missed Aurora’s birthday and her dance recital (we bought the dvd though). When he appeared to be improving, he was able to come home with strong oral antibiotics. However after about 3 days at home, the fever came back with a vengeance. We came back to Kansas City last Thursday for more testing, including a CT scan, lots of blood work, and a lung biopsy to investigate the lesions that the CT scan revealed in his lungs. Scary words. Scary unknowns.

 

The Fungally

From the time the CT scans came back, our heart team and the infectious disease team has suspected that Peter has a fungal infection in his lungs. The lung biopsy and cultures so far hhave supported this. After the specimens were taken from Peter’s lungs, he started an anti-fungal medication and we saw an immediate improvement in his fevers. So far, we know that he definitely had a fungal infection, nothing else has shown itself. We are waiting on some results to confirm what kind of fungus. Knowing what kind will help determine or confirm our course of treatment. The doctors think he has an infection from a fungus called histoplasma. This is a fungus that is common and widespread in the Midwest and loves to grow in soil, and bird and bat guano. Typically, disturbing the spores, such as being around construction, or around birds , can result in exposure. So basically it’s probably everywhere and most of us have probably encountered it. However, Peter’s suppressed immune system probably allowed him to be affected more than most. Our infectious disease doctors assured me that anyone could develop an infection from this fungus if they are exposed to enough of it. Right now we are looking at 7-14 days of iv medication. There is an oral medication he can begin when the team is satisfied with how he has responded to the iv meds. The full course of treatment takes several months. The medication he needs is hard on kidneys and also can make the levels of one of his anti-rejection meds unstable. So we will have to have labs often to monitor him.

 

So far in the hospital, we’ve had some movie nights, worked on some puzzles, colored some Paw Patrol coloring pages, watched a ton of Paw Patrol, eaten popsicles for breakfast, lunch, and dinner. For Peter, being in the hospitaly is basically like preschooler vacation, but also kinda in the worst way.