Trying to Sleep in a Recliner + Alarming Monitors = Midnight Blog Post

Yesterday morning feels like it was a week ago.  I've received more information and met more doctors (and nurses, and pharmacists, and interns, and med students, and therapists) over the past 48 hours than I ever thought possible.  But I have to give Duke props - everyone here has been amazing.  

I'll try not to bore you with unimportant details, but I know there are a lot of people out there who've been so fervently praying for us.  I just want to quickly update everyone on how Emi is doing and what the doctors found yesterday during her cardiac cath. So here goes a very abbreviated version:

We were told the procedure would take at least 3 hours, so when we got the call that everything was finished after less than and hour and a half, I didn't know what to think.  Did this mean things were better than they expected?  Or so much worse?  Waiting for the cardiologist to come talk to us felt like an eternity.  And when I saw his face I knew.  I could see what he was about to say wasn't the, "It's not that bad!" I had been praying for.  He confirmed she does have pulmonary hypertension, and that it is so significant she wouldn't have lived 5 years if it was left untreated.  We discussed the treatment options and what the next few months would look like as we adjust to our new normal.  He felt she needed to stay for another couple of days to be monitored and tested for an underlying cause that might be able to be treated and improve her prognosis.   

Right now Emi is prescribed oxygen 24 hrs/day, as well as 2 heart/lung medications, acid reflux medication, and she has to have all of her liquids thickened to avoid aspiration and help her swallow effectively.  During her procedure, her oxygen saturation went down to 80% (it should be in the high 90's), so they assume this has been happening every night when she falls asleep, causing the pressure to increase in her heart.  Coupled with the medications, the oxygen greatly helps relieve the stress on her heart by dilating the vessels in her lungs.  In addition to the oxygen, she will have to wear an apnea monitor that will alarm if her heart rate, respirations, and/or oxygen saturation are above or below normal limits. The ENT found that she has been refluxing, but otherwise her upper airway seems 'normal' (Praise GOD!).  The speech therapist noticed she has trouble with thin liquids, so we have to add a thickening agent to everything she drinks (or everything we make her drink).  I feel like I'm taking care of a ninety-year-old woman! :)     

I won't pretend I never had a moment where I thought, "HOW am I going to do this?".  Because I definitely did - and I still do.  And I'm sure the reality of her needs will feel overwhelming at first.  But honestly, when I stop and think about God's grace in all of this, I can't help but be grateful!  He's been saving Emi's life from the very beginning.  Against all odds, a woman chose life for her baby with Down Syndrome in a country where the abortion rate outweighs the birthrate 3 to 1.  He placed her in an amazing orphanage with people who truly love her.  He brought her from half-way around the globe to Duke University Medical Center - one of the best hospitals in the world.  He caused a chain of a events that FORCED us to see a cardiologist when every doctor (as well as ourselves!) felt it was unnecessary.  And now, yet again, He has saved her life.  God has mighty plans for this girl, I just know it.  I count myself blessed to be a part of it all.

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