Thursday, March 7, 2019

Busy Day

Today was a busy day to say the least.



We started early and they worked us through their machine most of the day.  Big hospitals amaze me.  When Joe was sick and at MDAnderson, I was amazed by them too.  So much organization and so much personalization.  They know your name, they know where you're supposed to be, they help you when you look the slightest bit lost.  I'm grateful for that touch. How bout these personalized stickers? Haha. No but it’s one of those things that God does that make you know He’s got you.


Henry was a trooper.  He hung in there and was such a good boy through the whole day.  We came back to where we are staying after it was all said and done took a short rest. I love the ways he falls asleep some times. He always rubs the edge of his blanket on his lips or cheek.







After our rest Henry fixed dinner and then all the Chinese kiddos in the house gathered and played. The little girl is adopted but the young boy came from China for medical care.





Tomorrow morning we'll check in at 6:45 EST and get started.  I learned more than I wanted to know about how a heart Cathetarization and Ablation are done and all the millions of things that can go right and wrong in the process.  I'm sad i'm walking this without Rob here but trust that God is going to hold me tight and walk with me.  The procedure will take about 3.5-4 hours, but before they get started on that they'll do an MRI and 3D Echo while he's sedated.  I dont anticipate having any clue about anything before around 1:00 or so but they'll update me along the way.  What I didn't know (aside from the lengthy list of risks) is that they could possibly get in there and find the problem with his "wiring" and not be able to fix it.  It may be too close to the part of the heart that tells it how to beat.   If that's the case, they'll leave well enough alone and we'll proceed without ablation.  With all the risks and possibilities, the Dr thinks he knows right where the problem is (based on what we know about Ebstein's anomaly, "Wolff-Parkinson-White Syndrome", and the details we have about his arrythmia) and he'll be able to fix it! Praying that God will lead him right to it!

We chose Boston Children's for several reasons as you know.  Today definitely reassured me that we picked the right place.  "Best in the WORLD", "The absolute BEST", "Excellent"... those are all descriptives I heard today about the doctors we have chosen. After meeting them and talking to them, i'm confident in our choices.

So here we go...
Let’s call this alert on my phone today a good omen 🤪



Truly.  Thank you from the very bottom of our hearts for all the love, prayers, messages, email, texts, smoke signals, and carrier pigeon messages. Y’all blow me away!  Thank you so much!

With love,
Jenn

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