Friday we went to see the pulmonologist and he showed us Eric's X-ray we took Tuesday in comparison to the one he had in February during his last Still's Disease flare. You could see a small hazy white patch in the bottom of his right lung - it appears to be fluid-like. We could most likely attribute this to allergies or something he picked up. The symptoms started a few days before we left for NY (which was awesome and we have an update coming this week for that at well).
One theory causing the mild chest pains during large breaths is that Eric may have neuropathy up in his chest as well. We know he has some scarring on his lungs from the extended time he was on ventilator support and has a chest tube when his left lung collapsed, as well as the ECMO lines being stitched to his body. We're going to follow up on this at a later date and Eric will begin the recommended dose of his Neurontin again to see if this helps with his chest.
We follow up with rheumatology next week to talk more about the deterioration in his shoulders and what type of shots they will give him. We're hopeful we can reduce the Medrol/Prednisone at that time. We got his labs back from last week and they were ok for the most part, but his CRP went from 2 to 16! And the Ferritin went from the high 600s to 1300+! We'll have labs done again soon for comparison and hope this was a lab error:/
In September, Eric is scheduled to get a sleep study again if we can get the insurance to cover it- a CT scan of his lungs and abdomen which will show us his liver and spleen and we can compare from his last CT scan to get an idea how things are healing. He'll also do some exercises and have a blood has exchange draw to see how well he breaths while doing physical activities. For now he is on a 5lb weight lift restriction until his lungs heal up. We also have a follow up with Dr.Essex from hematology in September. Actually the last 3- CT scan, blood gas exchange and hematology are all on the SAME day... Unfortunately, it's what must be done when you're short on leave and you travel 40 minutes to see good doctors :)
Just when we thought the doctors appointments were letting up...
1 week till Eric's 29th Birthday!