LIVING

With EoE, Allergies, Asthma and a G-Tube

A picture day of scopes

In honor of National Eosinophil Awareness Week…

How fitting that Tinleigh and Gage were scheduled to be scoped during this week. I had a flu bug yesterday that wiped me out completely. So instead of a long story about our day I just snapped a bunch of pictures to show how it all happens.

We start our day earlier than usual.

We start our day earlier than usual.

Sleepy kids

Sleepy kids

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Upon arrival they get out things for them to play with while I answer a million questions.

Upon arrival they get out things for them to play with while I answer a million questions.

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Time to decorate our gas masks

They put smelly sticks on the inside and stickers on the outside.

They put smelly sticks on the inside and stickers on the outside. This was Tinleigh’s first time of doing her own.

I get my bracelets.

I get my bracelets.

Then they change into gowns

Then they change into gowns

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Gage patiently waiting his turn. Tineigh went first!

Gage patiently waiting his turn. Tineigh went first!

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Tinleigh is done and Gage heads back in twenty minutes.

Tinleigh just waking up. Holding true to Tinleigh form she was so mad waking up she ripped her IV right out.

Tinleigh just waking up. Holding true to Tinleigh form she was so mad waking up she ripped her IV right out.

Waking up this time was a little rough.

Waking up this time was a little rough.

Sorry baby girl I wouldn't make you if we weren't trying to get you all better.

Sorry baby girl I wouldn’t make you if we weren’t trying to get you all better.

Dressed and ready to go but still a little unstable.

Dressed and ready to go but still a little unstable.

Gage is all done!

Gage is all done!

Got him up and dressed but he was just "too cozy" laying on the bed.

Got him up and dressed but he was just “too cozy” laying on the bed.

We've been dealing with this folie for the last week. WE HATE IT.

We’ve been dealing with this foley for the last week after his button was accidentally pulled out. WE HATE IT.

Gage got a new button today!!!!

Gage got a new button today!!!!DSCN2797 DSCN2796After the scopes we meet with the doctor and she hands us lovely pictures of our kids esophagus’s. In the bottom picture, bottom left hand corner you can see the balloon inside Gage’s belly that holds his Mic-Key button in place.

Time to head out!

Time to head out!

My fear on every car ride home is who's going to puke first?

My fear on every car ride home is who’s going to puke first?

Today everyone felt good.

Today everyone felt good.

We leave with only minor boo boo's.

We leave with only minor boo boo’s.

I guess getting an IV in Tinleigh today wasn't easy. They had tried her little foot before her hand.

I guess getting an IV in Tinleigh today wasn’t easy. They had tried her little foot before her hand.

That was our day. We were home by 1pm. The kids were irritable for a few hours then were back to normal.

Now we wait for the biopsy results. They are usually in by friday. The pictures are only indications of how things might be. I hate the wait.

So tentatively here’s our new path for Gage and Tinleigh. Unless the biopsies are way off from the pictures.

Gage’s esophagus looks great. He’s been trialing rice and blueberries. If his biopsy is clear to possibly 20 eosinophils then we will stay with the rice and blueberries. To that we will add cocoa, tapioca, green beans, strawberries and one other veggie. If by chance his biopsies show a lot of eosinophils then it’s good bye rice and blueberries. We have to wait a certain amount of time, could be six weeks, then start a new food trial.

Tinleigh’s esophagus doesn’t look so good. She’s very inflamed and showing striations. Nathan and I sort of figured it would look like that because she has been choking on food a lot lately. We didn’t have high hopes and had talked a lot about our next step. She’s off so much already what could we change or take from her that would still allow her to thrive? She’s only 19 months old. We were set to have a feeding tube put in if this scope was bad. After some conversation with the doctor today we came up with one last ditch effort that will basically prolong getting the tube. Tinleigh will take an oral steroid for 5 days which will knock down the inflammation and eosinophils. Masking it is another way to put it. Then we will up the steroid she drinks at bedtime and nap. Again, masking things. Last we will switch out pork for beef, with caution. She did test positive to beef on her last allergy test. We have never seen a reaction though so we don’t rely too heavily on that result. We’re wondering if pork might be a trigger for her, this is why we’re switching. She shows viable signs of an allergy when she eats chicken and no way am I feeding a baby fish. With high allergies it’s not worth the risk. We’ll meet with the doctor in six weeks then probably scope her. If things are better we’ll back off her nap and bedtime steroid and see what happens. My guess is it will flare right back up. THERE IS NO CURE. The steroids only help things. If she doesn’t flare up then we’ll be able to start to add things back to her diet!

Charlie won’t be scoped again until probably late August, maybe longer as long as he’s doing ok.

May 21, 2013 Posted by | LIVING | 1 Comment

   

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