We discussed lowering dosages and alternative medications and other minor medical issues that need to be determined or rules out by other specialists that may help reduce some symptoms that are a result of "side effects" of the stills disease and lingering issues from being in the initial hospital stay for 3 months and sedated for two of that. Dr.Berney was on vacation and the current attending was a clear reminder of how fragile Erics health was, IS, and ALWAYS WILL BE. Pretty blunt right? For someone like Eric to have a case of Stills & HLH be triggered and spiral so fast and to overcome it is a blessing- one we know we don't take for granted, especially when we have seen so many lost to these very diseases. But overall, her cautiousness was a reminder that there's no place like home and we don't want to do anything that could bring Erics HLH out of remission or cause the dragon to fully awaken from his drunken slumber.
A few weeks ago Eric was feeling more down than normal and we had bloodwork done, Erics ferritin remains at 600+ and 200 is normal for adults. Eric will remain on his medications to control the Stills Disease indefinitely as of now so as not to rock the boat or let the sleeping dragon lye as our fellow Stillsies would say.
We then met our favorite Hematologist Dr.Essex for a quick bite and had great conversation talking about life's obstacles and all the great things everyone accomplished this summer raising money for Liam's Ligthouse Foundations 5K to Fight Histio.. We even ran into Mike, from PT, Jeannine the head nurse from the ventilator rehab unit floor,Dr. David and Nurse Bob from the ICU and even saw a few other familiar faces. Temple is truly our second home and we couldn't be more thankful for their support. So.. today turned out to be not just another appointment :) We go back in October and even got a rise out of everyone with our Histiocytosis Awareness Month TShirts!