Luca's Heart Journey - Post Op Day 12 Day

 Tuesday Update - Post Op Day 12 - Hospital Day 15

Yesterday was a big day for our little boy. Shortly after I arrived, the nurse came in with amazing news! After a disappointing day on Sunday, one of the surgeon's agreed to removing the RA line and was ready to remove it right away! 

The removal took less than five minutes and the nurses were so kind to get him right out of bed and into my arms. It was such a relief to be holding him again as I never imagined that laying him down in the ER crib would lead to 13 days of not being able to do so! I am so grateful that God spared my baby and gave me the privilege of holding him once again. 

He gave Mama a few soft smiles and we FaceTimed with his siblings who were so excited to see him! Unfortunately he had gone another 8 hours without food again in preparation for the line removal so he was quite hungry at this point.

Just before his nurses began his feed, the speech therapist arrived wanting to take him down for his swallow study. 

We were told last week that his vocal chord paralysis would impact feeding, but I was hopeful that maybe he would do better than expected.

When he returned from the study, I knew immediately that he hadn't passed as they started a ng tube feed right away. 

The therapist assured me that this is very common and most likely won't be forever, but it will be for the foreseeable future. 

He is not permitted to nurse or bottle feed until he can pass the study with aspiration. Please pray that his vocal chord will begin to function again soon.

If you know me in real life, you know that nursing is my primary form of comforting and soothing my babies so we are struggling with how to do so without having nursing as an option. My milk supply is also suffering despite pumping around the clock.

In regards to his eating, we also are not allowed to use the formula we were supplementing with at home (that he was doing so well on, in regards to his growth and no belly issues) so he was switched to the cleanest formula I could find that is FDA approved. Please pray that he tolerates this change well.

Yesterday also included the removal of his chest tube which is wonderful because they say a lot of older heart patients that can communicate comment on how painful the chest tube is. His wires were also removed since he has not needed any pacemaker assistance since surgery. 

In regards to the next steps in recovery, this week will probably seems slow. They will continue weaning him off the morphine and adavan, alternating each day until he is off of those completely. I long for the day when he is no longer affected by these medications and I can see his true happy eyes and smile again. 

We also started the process of introducing two new heart failure medications that will eventually replace the Milrinone that is currently being given intravenously. 

This morning his heart rate seems to be fluctuating, but the nurse says it could be a side effect of one of the new medications. 

I believe the doctors are a few beds down so hopefully they will round on him soon although I'm not sure today will be a day of big steps, my prayer is that he and I will have time to find a new normal in regards to how I can soothe and comfort him. 

This journey has certainly thrown us a curve ball in more ways than one and we are working to figure it all out. 

I was able to go home for the first time in two weeks last night and spend three precious hours with my other babies while Daddy was here with his Buddy. Please continue to pray for them as they are just wanting to be home together so badly. 

We so appreciate your prayer and concern for Luca and ask that you continue to keep him on your list!