Friday, March 9, 2012

The Results

I've been on pins and needles all week, waiting for Keandre's doctor to call with results from the biopsies.  To be honest, I didn't expect good news.  Keandre flares so easily.  The last five foods we tried to add to his diet were a fail.  And he's been affected by the wind and high pollen count in the last two weeks, too.  (For some people, EE and EGE have an environmental component.)

So it felt like a little miracle -- God's gift and encouragement to us and our son during a difficult season -- when Dr. S. called this afternoon and said Keandre SCOPED CLEAR!  Amazing.  Something to cry happy tears about! :)

For the EoE moms who read here, last July Keandre had 4 eos in his esophagus, and 37 in his stomach.  (At diagnosis in March '11, it was much worse than that!)  Now they found one eosinophil in his esophagus, and NONE in his stomach. 

Eosinophilic Esophagitis (EE) is an uncommon and difficult condition to treat.  Eosinophilic Gastroenteritis (EGE) is far more rare, and harder to treat.  Our little guy has both conditions.  Both are, physically at least, controlled right now!  He is not consuming elemental formula or steroid slurries to coat his esophagus.

Although this news made my day, Keandre's response was less than I hoped for.  And yet he was right on.  A first, he smiled, pleased with the news that his tummy looked good.  And then, for the next hour, he was grouchy and needy.  Finally, I figured it out. 

It's great to hear that you're doing better.  But when you still experience daily pain, it's a small comfort.  And when you sometimes struggle to swallow the few foods you're allowed to eat, it's a scary feeling.

Thank you, THANK YOU, for your prayers and support over the last few years.  You have blessed us greatly! 

Please continue to pray for wisdom for Andy and I and Keandre's doctors as we continue down this path.  Please pray for pain relief for Keandre, and healing for his heart as he daily faces the reality that he cannot live like other kids his age.

We know the Lord loves our little guy deeply, and has all his days planned out before him.  He has sustained us through many struggles, and we are hopeful for the future.

Monday, March 5, 2012

'My Hospital'

a goofy grin on our way to check-in

Keandre has a very positive view of our local children's hospital.  In fact, every time we pass it, he yells out, "Mom, there's my hospital!" :)  I have no doubt this contributes to his mostly easy-going approach to the testing we must do regularly to track how he's doing. This morning was his big day -- his fourth endoscopy (third in less than a year). 

My Aunt arrived at 6:30am to take over kid care so I could focus on getting Keandre and I out the door.  Keandre started his morning with a bear hug for me and a sweet snuggle for Aunt Maggie, so I could tell we were off to a good start.  Despite having no food or drink since bedtime the night before, he was all smiles, and so silly it was hard to get him ready! 

Keandre named his little goose Duck Duck Goose, or 'Ducky', for short. :)

His check-in nurse enjoyed his goofy demeaner, and gave him a little stuffed animal to play with.  After dressing in his 'pjs', we were off to play in a nearby playroom.  It was a mecca to plastic 'noisy toys'....a little overwhelming!  Daddy arrived to hang out with us, which helped pass the time.

Before they called us back, we met with the anesthesiologist and his GI doctor.  Keandre gave his doctor a huge smile and enthusiastic hug, which was super sweet to see.  Dr. S. has cared for him since he was an infant struggling to thrive, and although he's not considered a top doc in regards to treating Eosinophilic Esophatigitis and Eosinophilic Gastroenteritis, he has been a huge blessing to our family and we've been happy with his care.

Shortly before we got started, I had my first Mommy regret.  I told the anesthesiologist about the extreme agitation and confusion Keandre experiences after waking up from his previous endoscopies.  He suggested a dose of Versed, which would hopefully help.  When they brought out the bright pink, icky smelling fluid, I *almost* said, "Nevermind, we'll pass."  (We avoid food dye and unneccesary meds as a general rule.)  I still wish I had spoken up.  There was a delay as we waited for Keandre's turn, and for the next 30 minutes we held our sweetie as he zoned out and was barely functional.  I prayed over him a ton, asking the Lord to alleviate any negative side effects and help me be more assertive in the future.

Another sad effect of the Versed was missing out on the much-awaited Hummer ride.  I could have cried!  We took a picture of him with the Hummer before we entered the OR, but he doesn't remember that at all.  He was so out of it that Andy had to hold him upright, but he sure looks cute!

Afterward, Keandre experienced the same agitation and confusion as the last few times.  He was flailing, yelling at everyone, and it was very hard to remove his IV.  Confirmation that the Versed was not worth it! :(  He was also terribly distraught when he woke up enough to realize he hadn't been able to drive the Hummer.

When he calmed down just a little, the nurses were kind enough to bring the Hummer to the recovery room and let him drive it even though he was angry and couldn't even walk straight.  They were so kind to us!  The other families and staff were also very understanding as we left the hospital with our screaming kiddo.  I was afraid we'd have to prove we weren't kidnapping him, but instead they gave us looks of sympathy as they saw he was obviously going through a lot.  About 30 minutes later, he was much calmer.  So much for the Versed!  Not making that mistake again....

When we got home, it was just the two of us.  We snuggled, watched a new Little Bill movie I had bought on ebay, and his appetite returned *really* fast.  In the first three hours, he ate a couple servings each of homemade apple jello, grassfed beef, organic green beans, and rice cooked in homemade bone broth.  Amazing.  So much for the liquid diet they recommend for the first few hours. :) I'm so thankful he is such a great eater, and that it didn't make him sick!

Some mixed feelings came out in a little rebellion about an hour after we settled in.  I was on the phone for a few minutes, and he got to work cutting the ribbon and tags off Ducky, and ridding himself of those hospital bands.  I don't blame him.  I'd have some mixed feelings about it, too!  After that, he seemed to feel better again.

Did I mention that Keandre's doctor was happy with how the endoscopy went, and that, visually, everything looked good?  We are so thankful!  The labs will tell the true story, though, and we hope to hear results by Friday.  Thank you for your prayers.

I LOVE this kiddo.  I am so blessed to be his Mama!

Sunday, March 4, 2012

Lucas' first day of school

As I shared last week, Lucas chose to enroll in school with Nichole and Keandre.  We decided we'd better do another 'first day of school' picture since we did that for Nichole and Keandre last month.

Keandre wasn't feelin' the whole picture-taking thing, so he waited patiently off to the side. ;)  (Actually, he was mad that I was 'making' him go to school that day.  He was over it about 1 minute later.)

Lucas was pretty nervous that first day.  He was concerned that he'd be behind, or that he wouldn't understand how to do the work.  Thankfully he settled in quickly, and he says he enjoys school.  I am so proud of him for making this decision, sticking with it even when he was nervous, and settling in and making friends so quickly.  I think it will be a great rest of the year for him!

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! :)

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