Wednesday, August 15, 2012

Little Lovebug


Conner’s last 24 hours have been SOOOOOOOOOOOO much better than the prior 48 hours.  So grateful for the healing of our Jehovah Rapha, moving Conner in the right direction with less pain and fewer tears.


Yesterday they removed Conner’s external jugular vein IV, which seemed to make a huge difference in his contentedness.  Perhaps he never had a spinal headache and this particular IV (which wasn’t stitched in place, just held with Tegaderm (like a big clear Band-aid) was aggravating him.  It certainly looks like it could have been the culprit, with bruising and a few small cuts, and a puncture wound:

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For much of the day yesterday, Conner was in protective mode, not wanting anyone to come near him.  While I was so thankful he wasn’t bawling, my heart was still broken to watch my little love bug retreat into this state.  He usually reaches out for whomever comes within 3 feet of him, wanting to hug someone’s neck, but yesterday he stimmed wildly (self-stimulation—rocking in his crib, waving his hands in front of his face as stimulation, retreating from the world around him).  We tried to leave him alone as much as possible, in an effort to help him self-recover from all of the overstimulation of pokes, prods, blood pressure cuffs, needles, probes, etc.  By mid-afternoon, Conner was allowing me to touch him, then he gave me a kiss!!!  Thank you, Jesus!


Eventually, Conner was comfortable with sitting next to me in my little fold-out chair bed.  He was laughing and happy, but he didn’t quite want me to hold him.  I was rubbing his back, which was a huge victory (that he’d tolerate my touching him), and then he just leaned over and fell asleep within minutes.  Precious boy!!!



A nurse had to change some lines out while he was resting next to me, so that woke him, and he crawled into my arms.  While Conner felt the need to face outward, to keep an eye on his surroundings and monitor who was approaching him, this state of vigilance quickly faded to peace and trust.  Soon Conner was resting contentedly, laid out across me, in total relaxation. Such precious times to treasure.



Conner continued with contentedness from that point forward.  He had a great night that was tear-free.  Today, he hasn’t had any more bouts of crying, he’s been full of smiles, laughter, and radiating joy and love to everyone who comes near him.  He’s not quite to the point of climbing out of the crib to give hugs like his usual self, but he’s so close to that display of love that it makes me giddy.  For a while there, I wondered if we’d ever got our little lovebug back! 


The specialists who’ve assessed Conner this morning have been saying things like, “Wow, this is the first time you haven’t cried when I’ve come near you!”

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And, “Oh, look at that precious smile—I’ve never seen that smile before!”

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And, “Oh my goodness, he’s so adorable!  He’s so expressive—what a cutie!”


And, “Look at you, little flirt!”


The docs, specialists, nurses, nutritionist, etc. just finished their rounds, where I feel so privileged to be included in his care plan.  Conner will be transferred to IMC today, as long as he continues to improve, which is a step in the right direction…again. :-)  They’re going to try to set up PT/OT/Speech therapies soon.  They believe Conner will be here for another week or so (always hard to predict) because lots of his labs are still really wonky, and he’s still 100% dependent upon IV fluids to stay hydrated.  Another concern is that he still might need a blood transfusion.  They are watching platelets and several other blood count labs that are low.  They said today that if he didn’t look as good as he does, they would go ahead and transfuse, based upon his numbers, but he clinically looks great, so they’re waiting and watching. 


Infectious Disease and the International Adoption Clinic are investigating some really wonky labs that indicate an underlying immunodeficiency and/or other disease/disorder.  Everyone’s stumped because there are certain numbers that might point toward certain disorders (such as AIDS and/or Leukemia), but then there are other numbers that don’t coincide that on paper mean there’s no way he could have this or that, yet some levels say yes he could.  And then there’s the possibility that everything could just be so out of whack due to his acute illness.


In order to go home, Conner needs to be able to not depend upon IV fluids to stay hydrated.  It would be nice if he could get enough nutrition via mouth, but it is a possibility to go home on IV nutrition.  They won’t automatically let him go home on IV nutrition, it will have to be a decision based upon the number of days of failed attempts to tolerate oral feeds.  Let’s just pray and claim total healing in Jesus’ name for this sweet boy, that he’ll be able to tolerate Pedialyte and oral feeds without complications so that this sweet boy can get HOME!!!


No matter how good the care is here, institutional living just isn’t the same as family life.  Once a child is stable and not requiring medical care that can’t be administered at home, there’s simply no match to the love of a family and the encouragement of siblings and parents.


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Dear Jesus,

Thank you for healing me.  Please restore me to full health quickly so I can get HOME to my family.

Love, Conner

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