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!!
Lisy
I follow your site as friends from the lemke clan aka Amanda Zoll... I just wanted you to know we just went Gluten, Casein, Milk and egg free in our house because our 5 year old is Autistic and his food tests came back high in these items that we had no choice but to do it for him. It was so overwhelming the first time at the store but I asked the clerks and they helped me look for special tags ect. We are now 3 month into it and it's like 2nd nature. He fought some of the items like they make gluten free milk free Oreo cookies and those taste a bit weird and because we can't use egg we use flaxseed things don't really rise but I actually free better myself too. It will be ok ask the grocery people for help. When eating out make sure to say your gluten free there are options :) from a mom who just started that journey my heart is with you!
ReplyDeleteI am so glad the girls get to go home...it is truly the best place to heal! I hope Natalie starts to feel better...You will figure things out! At least their are lots of gluten free things out now days :) Good luck to you!
ReplyDeleteGood to get an update on the girlies. Yet another amazing example of endurance. I'm so lucky to have you all in my life! I am always strengthened by your influence. Thank you for helping me remember what truly matters. You are the best & I love you, Lisy! Hugs from all of us!
ReplyDeleteI have been reading your posts for a while now, but have never posted anything. I want to start off by saying you are all such inspirations! I'm so glad to hear that Natalie and Alice are slowly but surely getting better! I'm commenting today because I have been gluten free for about 4 years now. It's really hard sometimes (like when friends order pizza, the smell of fresh baked cookies/donuts/etc), but I feel so much better now that I'm gluten free! Things are getting better for those who are gluten intolerant/celiac. I don't know if you have a Macaroni Grill near you, but they have GREAT options for gluten free pastas! I almost couldn't tell that I was eating gluten free pasta! Olive Garden has a small gluten free menu as well. It seems like a lot of bigger companies are trying to come out with gluten free items as well (Subway is working on a gluten free bread for example) There are so many websites out there that will help you as well. My one suggestion is Pamela's products (http://www.pamelasproducts.com/). I use their Baking and Pancake Mix for my waffles and, surprisingly, cookies! My friends actually LOVE the cookies that I make with this mix. I hope this helps! Good luck to you all!
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