Wednesday Night Update - Post Op Day 13 - Hospital Day 16
Two weeks ago today, after struggling to respond to being placed on a ventilator, it was discovered that our baby boy was in heart failure. It's taken me two weeks to even verbalize those words, but that is the reality. His heart was functioning at less than half of it's normal function and at any moment, we could have lost him.
But earlier tonight, although experiencing some very hard withdrawal symptoms, our Buddy and I said farewell to the Cardiac Intensive Care Unit and stepped down to the regular cardiac floor here on 2B.
The past two weeks have been the longest, most challenging weeks of my entire life and yet looking back so much of it is a blur. I don't know how we got here, other than by His gracious hand picking us up and carrying us when we didn't feel like we could do the next thing.
He's crossed so many big things off the list. Making it through surgery. The coarctation being successfully repaired. His delayed chest closure. Lungs healthy enough to be taken off the ventilator.
Today's echocardiogram brought wonderful news of increased heart function.
Luca's right ventricle was moderately depressed upon discovery of the coarctation and his left was severely depressed.
Today the right is mildly depressed and the left is now moderate.
Dr. Frazier, who was the cardiologist to first tell us of Luca's surgery taking place the next day and who has asked to take him as an outpatient upon discharge, reminded me again today that she expects the left ventricle to continue to improve with time. Since it has four months to get tired, it needs more than two weeks to resume normal function.
It continues to amaze me that the Lord led us to A. I. DuPont where Dr. Pizarro took my son's tiny heart in his hands and repaired it to function again.
I will be forever grateful for His goodness.
These last little steps between us and home seem daunting, especially when I cannot give comfort to him as I want so badly to do, but we continue to plod the path with His Presence to guide us.
Luca is still on a heavy amount of narcotics and the process of weaning him from them is difficult. It will likely take several days. His little body fought the sedation so hard and he had to be given a lot of sedation to get him through surgery and the days beyond it so it will take time to get used to the lower dosage.
So our specific prayer requests are for Mama to be able to get Luca through the hard moments without rescue doses of the medication. His nurses rate his withdrawal symptoms on a scale (low being the best) and when he is left to lay in his crib alone, he scores a 5 as opposed to when Mama snuggles and holds his paci in and he scores a 2.
Ater discussing it with his team, we are hopeful that he was not successful at his swallow study because of the high dosage of medication he is still on so the prayer is that he will pass once he wake up more and is retested.
Your continued love and care for us is humbling and we appreciate everything so much more than we can express. Thank you for lifting him up over these last few weeks. Please continue to pray.
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