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#AveryStrong


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  • 2 weeks later...
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The Latest from Avery's Army

 

By the absolute Grace of God, Avery is doing okay. In the last 48 hours, the Graft vs Host disease went crazy. In a matter of hours yesterday, Avery became severely dehydrated and almost went into kidney failure. Although he was on IV fluids at home, it could not compensate for the amount of fluids he started to lose through diarrhea. The GVHD beat up his gut pretty bad. 
Chris made it to Omaha just in time before it got really ugly yesterday evening. Unfortunately I had to stay in Lincoln with the girls. (That's the really hard part about not having family to just call and drop off. Plus, we were in a state of panic and I was constantly on the phone with Chris hearing updates).
As soon as they got to the hospital, they immediately started larger volumes of IV fluids...to the point that Avery's temp was a little on the low side and he had to be covered with warm blankets. It was pretty scary for Chris to watch and pretty scary for me to be so far away and hear.
He has started to receive IV steroids to help treat the GVH systemically. Today, his chemistries and labs look good, as well as his rash. Unfortunately his gut has taken quite the beating, so it will take time to heal. I came up to the hospital today after school drop-off and Chris went back to Lincoln because they have a game tonight. Not sure how the rest of this week with play out, but we will continue to take it day by day and pray that Avery continues to make progress. We are so grateful for the team of nurses and doctors who pour every ounce of energy into helping Avery heal through this process.

Avery has been snoozing and snoring over the last couple of hours, allowing his body to heal.

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  • 3 weeks later...

Watching this young man and his family fight they way they have is truly inspiring. I follow all of Avery's Moms updates on FB. She is one hell of a woman. He has really been through a lot the last few weeks. In and out of the hospital for various issues such as dehydration. This boy is fighter and he isn't giving up. Here is the latest from his Mom

 

 
 
1 min · 
 

Today's check up went so well!!! Avery is now 68 days post SCT. His entire body is not only recovering from the transplant, but still healing from being in shock after suffering severe dehydration from the GVHD. Right now he is back on anti-rejection meds and prophylactic meds, as well as two different steroids to help heal his gut and to treat his entire body from GVHD.
Needless to say, if you're familiar with kids & steroids- it ain't always fun! 
Avery has gone from skin & bones to now having a puffy face & pregnant looking belly, all while having some pretty decent mood swings! Over the last week, we (Avery & I) have had our fair share of temper tantrums! We were at such a point of exhaustion and pain, as caregiver and patient, that we were ready to give up because the day-to-day has been too much. And with basketball in full swing, it means that its single parenting for me for the most part.
Fortunately, with tons of patience and bucketloads of prayers, we are back in the fight! It felt like I had a newborn again, with Avery waking up every 1-2 hours because of his diarrhea. Although he still has diarrhea, its less frequent and the volume is not 2+ liters a day. His gut has to learn how to work again without being damaged. His appetite has picked up, so he no longer does feeds on his g-button, but he is still on TPN via IV for 20 hours each day. His skin rash is healing and he is peeling like a snake!! Dead skin everywhere- drives me nuts!!

Avery is slowly getting back to being himself and it is WONDERFUL to hear his laugh and impersonations! Praise the Lord!

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