9.15.2010

Answers?

My sweet, little Einstein is just the best kid ever, he just has one little issue. Since he was little he has had tummy trouble. I had decided that was just the way he was going to be. I knew that certain foods made it worse and stress made it really bad. He had learned to deal with it and I tried to help him cope the best I could.

Then this summer things took a turn and his stomach was hurting a lot and he started losing some serious weight…almost 20 lbs since June. I knew he was getting thinner, but I just assumed it was because he was getting taller. One Sunday he said he needed some new church pants because his were not fitting, he let go of his pants and they literally fell to the ground. I was shocked. Since I don’t make it a habit to weigh my kids we pulled out the Wii Fit and used it to weigh him. And there was a 17 lb drop. That really got my attention so I made a call to the pediatrician. The doctor quickly realized that we needed to see a GI doctor and sent us to the Phoenix Children’s Hospital and their group of doctors.

This is Dr McOmber.

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He was the doctor that saw us and immediately he and Einstein hit it off and he made Einstein feel totally comfortable talking about stuff that most 10 yr old boys don’t want to talk to anyone about.

The first thing we started with was blood work and a few other tests. Again so grateful Big Daddy has a strong stomach and able to help out with some of the tests. Most of the tests came back normal. The big concern was that his iron level was very low. Everything else came back normal, including the Celiac panel. That left us with more questions then answers. Dr McOmber decided that to find out what was going on he needed a better look at Einstein. And he was scheduled to be scoped. From top to bottom.

The scopes were scheduled for Monday. Einstein had a couple of days of prep and he was such a trooper. On Sunday he was on a clear liquid diet and he was getting hungry and he still stayed positive. He could even joke about his sad dinner of chicken broth.

On the way to the hospital for the test he was so calm. I asked him a couple of times if he was nervous (because I sure as heck was) and he said he couldn’t really decide if he was nervous or not. It was so calming to me to see him so relaxed.

Once we got to the hospital he was admitted and given the cutest, tiniest, little gown. They were nice enough to give him 2 so he could be almost covered. This picture cost me all of my properties and most of my money in the Monopoly game we were playing…totally worth it!

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I think he rocked the look.

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He was excited that he was in room 10 while waiting for his turn.

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The nurses and hospital workers came into talk to him and I think they were surprised at how calm he was and matter of fact about what the procedure entailed.

When it was time to take him back they had me come in the room and began to put him under. It was horrible to have them put that mask over his face and have him go to sleep…and just tell me “Okay Mom, go wait in the waiting room and we will come and get you when we are done.” What? What the What? You just want me to walk away from my poor baby!

It took a couple of hours and finally they called me back to the recovery room and there he was.

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The poor thing had a hard time waking up and was so confused by his I.V. (they hadn’t put it in until he was asleep).

Finally the doctor came in to talk to me. We weren’t really concerned about it being cancer, because colon cancer is pretty rare in children. But the possibility of colitis and Crohn’s were pretty high on the list. Until he got a look at his large intestines.

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See how pretty they are. Nice and pink and lovely veining…at least that’s what the doctor said.

Then when he got to the small intestines he found some problems.

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All those little bumps and the inflammation in there is bad. He doesn’t know how Einstein isn’t in more pain.

So after looking at that we are leaning back to the Celiac diagnosis. We still have to wait for biopsies to come back to confirm. But I have to say if I had a choice between the “Big C” concerns Celiac seems much easier to control and deal with. If it is Celiac they will have the other kiddos tested as well since it is genetic.

At this point Einstein couldn’t have cared less.

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And the Chaos just might be going gluten free.

10 comments:

  1. So scary for moms especially. He was such a trooper!

    I hope they have more definitive answers for you soon!

    Hang in there!

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  2. Ack! That is high drama for a mama. I hope you get the answers you need. Going gluten free is hard but doable. There are some yummy recipes out there- the macarons I make are gluten free and they are totally yummy. Even the recipe I posted on my blog today can be made gluten free pretty easily.

    It's not easy to let them take your baby but his actions are proof positive that you're growing a man over there in the Chaos.

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  3. Wow, he is my hero! What a trooper for sure! I would imagine he understands he's got to endure these miserable tests to get some answers. What a brave little guy! Hope that the answers come soon and he's feeling much better!

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  4. I think everything is always harder on the mom. I'm impressed with him being so calm. What a huge blessing! I'm sure that made it easier on you. I have a friend that deals with Celiac's and I've been noticing a lot of foods in the store claiming "gluten free" lately. I think it's becoming more common. I just hope he gets feeling better soon.

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  5. Seriously girl, if it is Celiac, you drop me a line and I can give you lots of help. I have it, was diagnosed with my entire family (mom and all siblings) when I was 12. It is a serious LIFE change and a big change on the family too. It is genetic so I often wonder if my girls have it. Biopsies for them scare me though. Good luck with the diagnosis!

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  6. oh, i hope it is just celiacs. my whole family is gluten-free (except me) and it really isn't that bad. i have nieces who have been doing it since they were little and they are amazingly good about it, and they never complain.

    i just hope you get more answers soon! he is such a trooper, and so funny in all his pictures!

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  7. wow, how stressful.... I really hope your family get some answers soon...
    Your family will be in my prayers.

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  8. Good grief, what an ordeal indeed. He was such a trooper for sure.

    I'll root for the celiac, though I won't lie, the idea of having to be gluten free everything and so so rigid about what you eat....yikes! Doesn't sound fun.

    Good luck and keep us posted.

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  9. I don't know what I would have done. My husband had shoulder surgery last month, and seeing him so helpless--when he was coming out of the anesthesia it was unnerving. He is supposed to be strong after all. But to see your child all loopy and not knowing. Well...you are a strong mama. Poor guy. Hope things can be fixed soon. I am no doctor--duh--but those inflamations didn't look scary, just hurty.

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  10. I just read your upost. Wow! I can totally relate with the stress of something such as what your son was going through. My daughter wa fairly young and went through a battery of tests to determine she had IBS and severe acid reflux. Praying for your little man.

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