Today was very busy. The day started out by Natalie having an ultrasound done on her spleen and liver, the doctors wanted to make sure she hadn't developed any hematomas after the scopes yesterday. The ultrasound looked fine and presented no concerns.
Good news, Natalie does not have graft vs. host disease and she does not have a viral collection (CMV) in her GI tract. Bad news, the GI doctor explained to us that some of the tissue from the scope biopsy looked liked celiac disease. He said it's harder to determine considering that she just went through bone marrow transplant, because the tissue can be temporarily damaged. The plan is to have a confirmatory blood test in clinic on Tuesday next week. Also the doctor suggested to cut out all gluten from her diet to see if she begins to feel better. I would not be surprised if this were true. She complains of her tummy hurting frequently after eating. Mostly she would complain after taking medications...celiac wasn't much of a consideration. I believe we have checked for it in the past, so it's possible this may be a newer development.
This is a big deal, because it can be an entire life-style change...as if we haven't made life-style changes already, maybe it won't seem so big after all. I will say however, the low microbial diet they had to follow for the first 100 days is going to seem easy compared to a gluten free diet...at least until we adjust.
Time will divulge more information that perhaps will be helpful. I will take a week long course offered through the hospital for newly diagnosed celiac patients to better grasp the concept.
Whatever it is....if Natalie becomes healthier and stronger = HAPPIER; it will all be worth it in the end. We wish for her to have the proper energy she needs and the necessary nutrition. I feel a little overwhelmed and intimidated by this news, although I hope as I learn more, those feelings will subside.
When the doctor came in to tell me that Natalie didn't have graft vs. host or CMV, she didn't know about the celiac development. She took one look at Natalie and said, "this girl needs to go home...she is getting sad and her mental health is just as important." I was so excited to hear that. We anticipated her staying another couple days.
What a relief, especially because yesterday when Natalie heard that Alice was going home the following day, she sat by the window looking out and asked if she could go home too.
We packed the girl's rooms in record time today...we were so excited to go home. Upon turning the corner into the neighborhood, Alice said, "yeah, it's my house...I see my house".
I was so anxious to see the other children and hold sweet little Evie. Once I held her I hardly set her down the entire night. Natalie found her way to her favorite chair in the house and enjoyed being home. Oh, how lovely it is to be together.
This hospital stay felt much longer than 16 days; we contribute that to the stress of not having a solid diagnosis to explain Natalie's fevers, not having a PICC line most of the time, and Natalie having to do countless difficult things.
Sometimes I wonder if Alice got "sick" just to provide comfort to Natalie. Had Alice not been there, Tyler and I would not have been together during this very difficult time and time of many decisions. Natalie really needed both her parents this past week....maybe another tender mercy!!