Ezrah JOY's Fight

*UPDATES* 4/1/23 2:30pm Tony is currently drinking contrast and will be going down for a CT scan this afternoon to see if there is a possible “pseudo cyst” on the pancreas. His pain is still high, and he is not eating. They did an x-ray this morning of his digestive system, and there is no blockage. Because he has gone 5 days without food, they will most likely be administering a PICC line to try and stop the loss of muscle mass OR insert a feeding tube. (Neither are great scenarios, however, there is less risk with a feeding tube. We’re going to go with what the doctors think is best.) Folks, he’s not going anywhere soon. We’re here for the long-haul. I soooo wish this was an April Fool’s joke.  IF Tony has a cyst, they will do a procedure to go in and drain it. We met with a gastroenterologist who thinks it’s unlikely, but not out of the question. The CT will tell us more. The Gastro doc was super helpful in answering more questions. Tony does not fit the bill of what they usually se

*UPDATES* 3/30 1:30pm *Tony's pain is still VERY high. He is a little more coherent today and can hold more of a conversation, BUT he's not getting discharged today. He is very weak. I was able to help him get showered and changed. (The man may be in pain, but, he HAS to be turning a corner cause he is CHEEKY! It was refreshing to see a little piece of his personality come back). The goal is to see if he can tolerate clear liquids at some point. That will be a HUGE progression. *When he arrived, his Lipase level was over 3000. In 2019, when he had pancreatitis, it was 350. Today, it's at 272. We're heading in the right direction, but he just can't get a break from the pain and pressure. *The MRI did not reveal a kink, blockage, or "sludge." Which is both good and bad. He doesn't need a stint, YAY, but they don't know WHAT is causing this. BOOO! The MRI showed all they expected for someone with pancreatitis. We are being referred to a gastroenterolo

  I'm not sure if the correct word here is "irony," but, gosh, things with Ezrah are smooth... until they aren't. It's ironic. A bit. I'm sure there's an Alanis Morissette song here somewhere. I was JUST going to blog on Sunday about how Ezrah's leg pain has been VERY minimal, and we have been so thankful that the prayers are WORKING. This sweet relief has come with ZERO medications, even OTC pain meds. *PRAISE HANDS, JAZZ HANDS, ALL OF THE HANDS* But, this Monday, things took a turn, and Ezrah's hands and feet are absolutely COVERED in a rash/hives, and she is INCREDIBLY uncomfortable. We visited her Primary Care Doctor today, and again, the word "auto-immune" came up. Ezrah has so many doctors scratching their heads because she is not presenting classic symptoms, pointing one way or another. She's affectionately known as their little anomaly patient. But, clearly, she is sick. She has inflammation inside, outside, ALL OF THE SIDES. 

*post visit stop at Barnes & Noble. Books are Ezzie's after-visit lollipop. She got 3. Mom got 1. Dad got none.*   The Nelson Squad met with Dr. Horikawa today at Randall's to discuss Ezrah's pain levels and possible treatment options. (For those who don't know, her pain is back with a vengeance, mostly at night.) He believes Ezrah is presenting as a typcial Osteoid Osteoma patient, however, she does have some weird stuff going on with how the inflammation is presenting in her body and she's a bit of an anomaly. (Which is why this crazy kiddo's leg has presented as an infection and was treated for such. Regardless, that treatment did eradicate the holes/inflammation in her tibia.) He would like to do another contrast MRI (which has Ez completely paralyzed in fear) to get another data point post-op and 6 months from her first MRI. (Y'all, that first MRI was a complete trauma sitch for her and therefore she is completely, understandably scared. The IV tech