Keandre loves this rabbit statue at the Children's Hospital.
I love this picture of their silhouette. :)
I admit it. This has been hard. Our son is hurting. He may hide it well sometimes, but he is not okay. And it is impossible to settle for that.
I am doing research like there is no tomorrow, and skipping sleep in order to do so. Keandre has both EE and EGE (both are types of EGIDs). EE is rare, but is the most commonly diagnosed of the several types of EGIDs. EGE is even more rare.
Keandre's GI doctor treats this disease on occasion, but it is not his specialty. And since we're not traveling out-of-state to a clinic that specializes in the treatment of EE and EGE, I can't assume his doctor is up-to-date on the more recent treatment plans. That means I have to research and advocate for the treatment we hope to use, then approach his doctor for input and hopefully approval to proceed.
Today I met with Keandre's GI nurse. I had a whole sheet of questions for her! Now, after an awful weekend where I was seriously stressed over all of this, I finally feel more confident that we're going in the right direction, even if it may not be the approach that ultimately heals Keandre.
We are trying a more natural approach right now, and I'll admit it is not working very well so far. But we will feel much more comfortable approaching the use of heavy steroids and an elemental formula diet after we know we've tried the alternatives first. It is a big deal to go no-food for a couple months. It is an even bigger deal having a g-tube for feedings. We don't want to skip ahead to that point if we don't have to.
5 comments:
:( Im so sorry your struggle continues. Healing is a long one, and I was just discussing my lack of patience today. I know I dont know the whole story...But limiting food and allowing gut rest and healing is sooooo very important. Hang in there mama. You are obviously a fighter, and your kids will call you blessed because of it.
You have such a great approach, though I know it's not easy. I pray for rest and healing for both of you! I know you have lots of family close, but I'm great at kid-sitting if you need time to get something done :)
"He may hide it well sometimes, but he is not okay." I like how you worded that, and I can definitely relate. I get tired of people always saying, "But he looks so good!" They don't see what I see - how he hurts, how the sparkle is gone from his eyes.
Finally got some results from where they reread my son's old biopsies to look for eosinophils. Stomach and small intestine were borderline or elevated - and he was formula-only at the time. We're going to have to go out of state to get help and a confirmed diagnosis. Our GI is a really nice guy, but it's very obvious that he is clueless about EGID.
I am with you in spirit and reality. Especially after the reality of an appointment that I was hoping would be helpful and instead it made me more confused and worried! AAGGHH.
I look forward to hearing the nurses answers to your questions and as always, we are praying for your family and K especially.
I am with you in spirit and reality. Especially after the reality of an appointment that I was hoping would be helpful and instead it made me more confused and worried! AAGGHH.
I look forward to hearing the nurses answers to your questions and as always, we are praying for your family and K especially.
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