Thursday, March 14, 2013

Meet EoE.

Our sweet little Jude has not been growing like he should. He got an EGD (a scope that goes through the stomach and looks at the esophagus, stomach, &duodenum and takes pictures and they get biopsies, or samples of tissue) yesterday and showed all the signs of 
Eosinophilic Esophagitis (EoE).




This is an inflammatory disease of the esophagus where Eosinophils, or white blood cells, build up in the esophagus as a response to allergens. This can cause many different symptoms, but in Jude has caused vomiting, difficulty swallowing, and poor weight gain. We are waiting to hear back form the doctor on the results of the biospy, which will definitively diagnose the disease. From there, we will go to an allergist and get more in-depth testing to find out his allergies so we can eliminate them. That is how it is treated, just eliminating whatever is causing the eosinophils to flood to the esophagus. We have already had allergy testing done and we eliminate those foods, so there has to be something else we are unaware of. I am thankful that we are getting answers and progressing towards figuring out what is going on so we can fix it and get our little boy growing! I as most worried about not being able to give Jude anything to eat or drink after midnight the night before the procedure, wake him up early and no be able to feed him (he usually nurses at 5:30 and when he wakes up), then drive over 30 minutes to the hospital (he does not care for his carseat). I thought he would be hysterical and miserable... but he wasn't. :) He was happy and cheerful and patient and sweet. He had fun in the waiting room and playing with the glove was probably one of the highlights of his life. He absolutely loved it! He was not the happiest little camper after the procedure but soon all was well and he even endured the ride home like a champion!

Dan: "I learned this in Medical School... old pediatric trick." Rachael: "You did?!?!" Dan: "No... Patch Adams..."



The group of GI doctors we are seeing are specialists in this disease and we feel so incredibly thankful that we are here to be able to see them. Maybe this is why we have ended up here in South Carolina at this time. We have received superior and timely treatment. Every doctor and especially those involved in the EGD yesterday could not have been better. Having the CRNA take my baby away was hard but trusting them and having confidence in them made it okay. I have been the health care provider and I have been the patient, but being the mother of the patient is completely different and so much more difficult. I feel incredibly indebted to the our doctor, the anesthesiologist  the two nurse anesthetists, and the nurses who took care of Jude yesterday and will forever be grateful to them for choosing the careers they have and dedicating their lives to helping others and taking pride in what they do.



It is so hard seeing Jude struggle in any way. I know it is harder for us, as his parents, at this point because he has never appeared to be in any pain, he doesn't even know he is missing any foods, he doesn't mind that he is smaller, and he is overall perfectly healthy and happy besides the occasional vomiting. It could be so much worse. I am so thankful we are getting this diagnosed and treated while Jude is so young so we can do everything we can to treat it and increase our chances to get rid of it! 


As I have been researching and starting to let myself get a little worried, this video came to my mind. It brought me so much peace as I watched it. What an absolutely amazing girl. I am thankful to have answers. I am thankful for my perfect child and the health and strength that he does have. I am thankful for all we know about EoE and how far it has come in the past few years and we are being treated how we are. I am thankful that we are moving forward and doing everything in power to help Jude. Most of all, I am thankful for faith in our eternal plan, that no matter how hard life is and how difficult these trials are, and no matter what the outcome is, we are being watched over and protected by our Heavenly Father. Our Savior knows every pain and sadness we have been through and as we turn to him, we will be made whole. 


I am ready to face this and do absolutely anything to take care of my sweet, precious child!



10 comments:

  1. My heart JUMPED when I read this post title. I know exactly what EoE is. Well, as much as you can learn from google searches. I thought I was practically the only one in the world who knew what this was. Finn used to throw up every day out of the blue. Him and Jovie show most of the signs for it except poor weight gain. I had an appointment with the GI to get this checked out months ago but ended up canceling it because we got sick. I never made another one because I never feel like I get my questions answered so I just decided to deal with it. Please let me know how this all goes for you! Poor little Jude. It's so hard to see babies go through stuff like this. Hang in there!

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    1. LINDSAY!! Have they been doing better? Do they ever show signs of allergic reactions? You really should do into the doctor. I know what you mean about not feeling like you get your questions answered sometimes. I always write a list of all my questions before I go in and even if they act put out or rushed, I don't care. Just keep questioning them until you understand. Anything for the babies. Poor things, you may have reflux or something that runs in your family. But maybe it is EoE. I know it's best to figure it out when they are young so you can do everything to prevent it! You aren't kidding. It is INCREDIBLY difficult to see your children hurt.

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  2. Glad you got some answers... & if that isn't the cutest hospital-gowned patient I EVER did see!!!!

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  4. He is such a sweetie! Hang in there! My sister's little girl has struggled with severe allergies her whole life too, it has had its ups and downs but she is a happy growing little girl! As I am sure Jude is and will be. Sending mega good vibes.

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  5. i read a blog that spotlights 'special needs' kids on fridays. here is a kiddo who has EoE. it's a very severe form of it but maybe can help. http://www.thislittlemiggy.com/2012/05/special-needs-spotlight-cole.html

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  6. you are a wonderful mother. jude is very lucky to have such amazing parents & I'm so glad you got answers and the doc's were kind. Praying for you and Dan and Jude. Love ya'll

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  7. Poor thing. Our nieces are allergic to everything but fruits and veggies (not an exaggeration) and they now see it as a blessing because it's made them so healthy! I hope the allergists can discover what's wrong and help sweet Jude. He looks so loveable and happy in these pictures!

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  8. Thank you everyone for being so sweet and supportive! That really is the best and most helpful thing I could ask for. I feel like a big baby mess over this but I am so blessed to have such wonderful friends!!! <3 <3 <3

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  9. Poor Jude and poor mama! You did get some ridiculously cute pictures of him in his little gown, though.

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