If labs are trending towards normal, the official diagnosis for the acute issues will be severe Adenovirus. That would be responsible for the high fever and her being so so sick and labs being so crazy... They tell me it can take up to 2 yrs to shed the virus completely but it shouldn't affect her like this again and she won't be contagious.
It does not, however, explain her ongoing belly pain. They are still thinking that is from the Eosinophilic Esophagitis and possibly some other undiagnosed problems of that nature. The amazing thing is that one of the nations leading EE specialist is here at Riley and has offered to take her! He has a team that will deal with every facet of the disease.. allergy testing and all. He is going to schedule us with all of them the same day asap so we dont have to make separate trips. He has been so good to us through all this. He is the one that kept looking me in the eye and assuring me they would figure it all out. Just so happens he was here when she came in Friday. ;)
Sooo, IF if the labs are good...and IF the fever stays down.. and IF she is eating and drinking well...we will get to go home tomorrow! I know that is a lot of if's but we are remaining hopeful. This has been a horrible and absolutely terrifying ordeal but we are thankful for every single minute of it because it is getting her the help we have been searching for for over 2 years. I'm sure it was all part of the grand design...everything from the mis-read to that particular Dr. being here for her. Radiologist don't "mis-read" CT scans that badly everyday. Most definately happened for a reason.
There is a big red digital clock up on the wall behind her that started keeping time when we got here and will stop when we leave. Right now it reads 79 hours and 3 minutes. That's not even counting the 16 hours from when she was admitted to Jasper to when we got in the room here. So all totaled it has been about a 95 hour roller coaster ride for us and 95 hours of agony for her. We are so ready for this ride to be over.
Will keep you all updated as we find out more. Thanks to every single person who has prayed for her.. even if only for a minute. It made ALL the difference. Thanks in advance for continued prayers and please... keep praying us home. <3
This is about 5 minutes after the 2nd blood draw... absolutely did her in. :(
2 comments:
I will continue to keep her and the rest of the family in my thoughts and prayers...Riley's a great place...I should know I have been there a lot of times..
I hope you can bring that precious little girl home today. <3
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