Todays 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 youre familiar with kids & steroids- it aint 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!
Posted on: Thu, 04 Dec 2014 05:25:05 +0000
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