This planner is no longer available. We're actively working on enhancing ways for your friends and family to assist you. In the meantime, feel free to use journals to share your requests for help.

Add Request
Accepted
Export
List
Day
Week
Month
Apr 21-27

This Week

Emmett hasn't added requests yet
Leave a Well Wish to encourage them to add to their planner or ask how you can help.

Latest Site Updates

Journal

  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!

Read the latest Journal Entry

7 Hearts • 3 Comments

SVG_Icons_Back_To_Top
Top