Saturday, March 3, 2012

Time to ride that Hummer again

Keandre riding a Hummer at the children's hospital, on the way to the OR in July '11.

We heard from Keandre's gastroenterologist (GI) on Friday, and they have his next endoscopy scheduled for Monday morning.  How's that for notice? LOL  Before that, we knew they were hoping to schedule him for "sometime next week". 

Andy's office is closed on Friday, so he could not ask for Monday morning off.  I was just a little panicked yesterday afternoon, trying to figure out sitters, rides to school, etc. for the other three kids.  It's not easy to find a sitter who's up and at 'em and ready for extra kiddos at 6:40am!  Not surprisingly, God provided.  My Aunt has Monday off, and she will fill in the gaps, caring for Brooklyn and taking Lucas and Nichole to school.  What a relief. :)

And then a co-worker, who is also our neighbor, surprised us by contacting Andy's boss and arranging for him to have a couple hours off to join us at the hospital.  Keandre and I will be so glad to have him there with us!  He handles the 'before' really well, but the 'after'... not so much.  Waking up from the anesthesia is very hard for him.  A little extra support will be nice.

This endoscopy feels like a big deal.  I admit it -- I'm nervous about what we'll find.

Keandre's most recent scopes were March 2011 (diagnosis) and July 2011.  He is definitely due for another one -- it is the ONLY way to know if his treatment plan has been effective enough.

At his March '11 scope, he was in bad shape.  He was vomiting regularly, and had terrible reflux and chronic stomach pain.  He didn't know what it was like to NOT be in pain.  At his July '11 scope, we found his EE had cleared, and the EGE had improved some. Unfortunately, EGE is rarer and much harder to treat than EE.  We removed more foods and he had less pain and symptoms.  But it was not enough.  He is still dependant on 15 mg of Prevacid daily.

Since Keandre's diagnosis almost one year ago, he has gone from eating all but 5 or 6 foods (due to food allergies), to having only 10 safe foods total.  The good news is that he appears to be handling these foods well, and he has been able to stay off the elemental formula and feeding tube that becomes the only effective treatment plan for many children with this condition.  I hope the endoscopy shows that we're on the right path. 

This condition is so complicated and overwhelming to treat.  Sometimes I have to look hard to find the positives in the journey.  But the reality is that he was so ill for so long, and there are definite improvements in his health during the last year.  I am so happy to say that, between the diet changes and a few supplements he is on, like daily Vitamin D3 and very high-quality probiotics, his body is healing.

Keandre's environmental allergies have been terrible his whole life.  Only a combination of Benadryl and Zyrtec would control them enough for him to be functional and able to play outside like other children.  Even then, he lived with a runny nose day in and day out, and his eczema was terrible.  As we changed his diet and added important supplements to his daily routines, his environmental allergies began to heal.  First we removed the Benadryl and Zyrtec and replaced it with D-Hist, a natural allergy supplement that he would take twice daily to control symptoms.  (We started with children's chewables, then switched to the adult capsules.)  We could always tell when the supplement was wearing off and it was time for the next dose.  A few months ago, we realized he didn't need the D-Hist daily anymore.

That's right, folks.  My super allergic kiddo is off all allergy medications!  He has healed to the degree that a mild allergic reaction or an environmental allergy flare can be treated with D-Hist instead of Benedryl.  In the past, those same reactions required lots of allergy medication.  We still keep allergy medications and his Epi-Pen Jr. close by for those scary anaphylactic allergies.  But we have not needed them for a long time. 

Please pray with us that we have good initial results after the procedure on Monday, and good news when the labwork comes back a few days later.  To be honest, if things look bad, I'm not even sure what we'll do.  It would be a very difficult place to be.

In the meantime, Keandre is looking forward to barreling down the hospital hallways in a bright yellow Hummer.  And he is telling everyone we see that his doctor is going to take pictures of his tummy on Monday.  He is so brave! :)



Dan said...


Alisha said...

Wow Kiara! Keep us posted! Scary stuff! But we serve a God who knows all things...praying!

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