Friday Evening Update - Post Op Day 22 - Hospital Day 25
The last two days have been busy as it seems we may have picked up the pace a bit on our road toward home!
Yesterday, Dr. Shruvi, once again advocated for a larger wean than the rest of the team wanted. She reasoned that with his low wat scores of zero to one, we should continue to be a bit more agressive in the weaning process as it is essentially the only thing keeping us here. It was decided that we cut the Morphine dosage in half. Today, we made the final cut on his Ativan dosage and also spaced it to every 12 hours instead of every 8. If he continues to do well, you're hopeful that he will be off all of these medications by early next week.
Yesterday's echocardiogram was unchanged from last week's, but that was expected. We are praising God that there was no regression. Please continue to pray with us that his function improves over the next few months as the doctor's believe it will.
Labs were ordered today to measure his BNP again. When his heart defect was discovered, his BNP was 2600 (anything over 100 is a sign of heart failure). A week ago it was 152 and it is now 95! To us this is nothing short of a miracle.
Another exciting step on the road toward home was the beginning of our ng tube training. So far I was able to place two tubes which is a prerequisite for discharge. Daddy will place his first tube on Monday. We were also trained in how to operate the feeding pump.
Originally we thought that we would complete our supervised family care this weekend, but it is now scheduled for Monday night into Tuesday morning. During this time, we will be responsible for providing all feedings and drawing up and giving each medicine without the assistance of the nurses. Another prerequisite for discharge.
Luca's repeat swallow study is scheduled for Monday afternoon at 2 PM. Please pray with us that his vocal cords are functioning at a higher level and that he will be able to eat by mouth without aspirating. Although he would most likely go home with the feeding tube regardless of the outcome, passing this test would allow us to start feeding by mouth again in hopes of weaning him off the tube sooner rather than later. He would also be allowed to nurse again which would provide comfort to both him and Mama!
As we inch closer to finishing up this portion of the journey, I would also ask specific prayer for Luca's continued weight gain and overall health.
It is hard not to be anxious about the amount of other sicknesses that seem to be running rampant right now. It would be so sad to have something else set us back when we can almost see the finish line!
Words cannot express how grateful we are for all of you and your prayers and support over this last month. We have felt the prayers and have been so blessed by the tangible gifts you have given. Whenever the social worker comes by to talk to us, she is always amazed by the incredible support system we have. I wish that she could understand that this is what the Body of Christ is supposed to look like. I know that our family will be striving harder to provide the kind of comfort and hope that you all have given to us to others once this is behind us.
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