Thursday at the Hospital

Today was a really busy day.  Full.  Crazy full.  Both boys woke at 5AM and never went back to sleep.  They had to get labs drawn to check their electrolytes for refeeding syndrome at 5AM, so they were both too worked up to get back to sleep.

 

Lisa, the photographer with the Express News, came to the hospital today to photograph the boys so she can document their journey.  While Lisa was here, the whole team of doctors and specialists came in to meet with us.

 

Here’s the plan:

• Conner will most likely get a G-tube (feeding tube surgically implanted in the stomach) once he’s strong enough to endure surgery because he continues to not take anything by mouth, except milk.  He needs more calories and better nutrition than a milk-only diet can provide.  His NG tube creates further issues with his oral aversions, so a G-tube is what we’re all leaning toward, unless he decides to start eating by mouth.
• Cooper has all sorts of possible issues going on.  The endocrinologist met with us to explain her thinking regarding all of Cooper’s tests.  We only understood about 1/4 of what she was trying to explain to us.  Basically, we know Cooper has hypothyroidism (and is now on meds to help it), hypoglycemia, and anemia, but we don’t have results back from a few more endocrine tests that will help them determine what all is really wrong.
• Endocrinologist speculates Cooper has a growth on his pituitary which is causing a host of problems.  His soft spots never closed, plus a host of other issues I can’t even recall at this time.
• Cooper will have an in-depth, sedated MRI just as soon as they feel  he’s strong enough to handle it.
• We’ll be here for at least another week, possibly longer.
• They’re going to do genetic testing on both boys because there’s speculation regarding whether both boys really do have Down syndrome!
• Also doing more tests on Cooper because of concerns on endocrinologist.  She’s ordering a test of some sort that has something to do with Leukemia.  Yep, that was one of the things we didn’t quite understand.  We think the endocrinologist is just wanting to get a baseline of something or other, but not clear on this one.  Claiming the miraculous healing of Jehovah Rapha, trusting to hear the same results we heard with both boys’ hearts.  PERFECT, no problems whatsoever!
• Conner’s IV infiltrated.  PICC team came in to insert new IV.  Took over an hour to get one in.  Lots of pokes, lots of tears, lots of trauma.  Everyone sad, including the PICC team.  Conner cried and cried and cried.  Glad to know he still cries, even though his cries were ignored for years. 
• Cooper pulled his NG feeding tube out at least 4 times today.  We finally talked the doctor into just letting us try Cooper eating by mouth without feeding tube supplements.  So far, so good!!!
• Cooper’s and Conner’s blood work got mixed together today at the lab when the tech thought they were the same person.  The samples became null and void after that.  Had to get new ones.  URGH.
• The boys’ stool samples also got switched, so those results are also null and void.  The lab wouldn’t even finish the tests because the labels were incorrect (after we figured it out). 

So grateful Daddy got to come hang out today!  The boys ADORE their daddy!!! 

 

Also grateful for the awesome meal Carrie (Rowan’s mom) made and brought to us.  Delicious!

 

The toilet seat Daddy bought for Cooper is working.  He’s now peeing on the potty seat and not holding his urine for 12+ hours!  He’s also NG tube-free and lovin’ it.

Conner and Cooper both got some spunk today.  They were both standing in the bed, trying to climb out, laughing, FULL OF LIFE.  They had physical therapy and Conner cracked up.  Conner wants every person who walks into the room to hold him.  Little lovie is a total snuggle bug.  Cooper now lifts his gown for people to listen to his heart, chest, and belly.  Precious, smart boy.  Conner and Cooper both lift their gowns and lie down flat when they see me grab a diaper.  They’re smarties.  And lovies.  I could gobble my little guys up.  Precious.

 

Grateful that God shared our boys’ testimonies countless times today.  One visitor after another kept our room hoppin’ today, all day, spreading the Good News of Jesus Christ and His adoption plan.

 

May the seeds that He is planting be watered and sprout and spread like wildfire!!!  Oh, grateful that tonight the doctors said to hold all vital checks and labs so the boys (and I) can hopefully sleep through the night.  Oh wouldn’t that be glorious?!?!

 

Nighty-night!!!