Emmett’s Story

Site created on January 10, 2019

Welcome to Emmett's CaringBridge page. We are using it to keep family and friends updated in one place. We appreciate your prayers, support, and words of hope and encouragement during this time.  Our little Emmett was born slightly premature and spent a total of 6 weeks in NICU while many doctors tried figuring out what was causing his various symptoms.  Many more weeks of transfusions, various hospital admissions, and new symptoms presenting themselves led his team of specialists down the right path of figuring out his diagnosis. After going through genetics testing, it was revealed Emmett was born with a very rare genetic disorder called WDR1. This affects the development and function of platelets and also neutrophils; a type of white blood cell essential to the immune system.  The plan is set in place for Emmett to receive a bone marrow transplant at this time. We are lucky to have found a very good match for him and are hopeful this will start him on a road to a normal life with a working immune system. In the meantime he is being treated with many different medications to keep him healthy and strong going into this coming week. 

Newest Update

Journal entry by Heather VanAller

  A couple of weeks ago Emmett was admitted for a short 2 night stay to try and figure out why he was having fevers and excessive vomiting again. It ended up being bad timing to put it simply. We were in the process of weaning him off of the steroid, prednisone, when he underwent his repeat EGD and flex sigmoidoscopy. These procedures put his body in distress that in turn caused those symptoms and very high elevated inflammation levels. On the bright side; his scopes showed that he has a healthy, ulcer free, digestive tract! This was the news we needed before we could schedule his GJ tube placement. So he was treated with stress dosing of steroids and we were sent home.
  Over the last couple of weeks things had been getting back to normal until this past weekend when the same symptoms returned. Knowing how cautious our wonderful BMT doctors are; I went to his Monday morning appointment with an overnight bag packed. Yes, he was admitted again this past Monday. There is no sign of infection. His chest x-ray does still show some slight pneumonia in his right lung, but it hasn't gotten any worse over the last couple of weeks. I stress again he does not have an infection. This pneumonia was caused by inhaling a liquid; perhaps some vomit or some of his oral feeds. It's hard to tell with his NJ tube still there. 
  They tested him again for norovirus and as we all assumed; it came back positive. They are hoping once he gets off his immunosuppressant drug, which we started to wean this week, that his system will be able to get rid of it completely. He's been on a couple rounds of an anti parasite drug called Nitazoxanide and they started him on it again yesterday for yet another round. One of their theories is that it helps suppress his symptoms for awhile and then they come back again. Another theory is that we started weaning his steroid too fast again. I guess time will tell.
  The plan is for him to be here through Thursday as he will be getting his GJ tube placement tomorrow. We are excited to see if his vomiting improves with this change and are hopeful he'll soon make big strides with eating normally. We ask for prayers that everything goes smoothly during this surgery and that he's able to handle this new way of getting feeds. They will have to test his stomach and we're a bit nervous he won't keep it down. He will be in excellent hands though with the same surgeon he's had in the past. I will update you all in a few days and let you know how things are going. We are definitely hoping to get home again soon to enjoy the beautiful weather and get back to our walks outside!
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