Thankfully, not much to report from this appointment. Ela’s echo still shows thickened (hypertrophy) septum (heart muscle), but it’s not worse. Her cardiac labs look pretty good so far, but we are still waiting for a couple of important ones to come back early next week. The Dr. calls this phase right after extensive rejection treatment the “honeymoon” period. I do hope and pray we can stay in this phase for a very long time without her rejection actively damaging her heart even further! For now, we will do monthly infusions via her port as a maintenance treatment for this rejection. But at the slightest increase in cardiac numbers we will have to determine a more rigorous (probably more experimental/less data infusion like Daratumumab) treatment to possibly keep the rejection at bay. It truly is an appointment by appointment approach. The treatment plan can change quickly with just one lab result. We are very much living day to day, week to week, month to month.

This last admission, we learned some things and are beginning to understand a harsh, scary statistical outlook for our precious daughter. Statistically, Ela’s heart won’t last as long as what we had originally expected. Statistically, a successful heart transplant with no complication in a child could give that child 10-20 years with the donor heart (so we were told). Given Ela’s complications, statistically, she won’t get that 10-20 years. We also learned, statistically, the way a patient’s body responds to the 1st transplant is usually how their body responds to a 2nd transplant. Right now, there are around 14 kids at CHOP alone who are waiting for their 1st heart transplant.

Notice, I write statistically. I have said it before and I will say it again: God is not bound by human limitation. He is not bound by statistics. He is all-powerful. He is beyond comprehension. He is limitless in resources. We know God can give her many more years if that’s within His plan. It hurts deeply to think of the alternative, but may the words of Job, be our response in whatever God wills for her life: “And he said, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord.””
‭‭Job‬ ‭1‬:‭21‬b

Right now He is giving….He gave her this many years already. He gave her a new heart. He is giving us this time with her. He has blessed us abundantly in so many ways. May we bless His name no matter the circumstance.

Now, Ela is no where near needing a 2nd heart transplant yet as long as her coronaries and heart pressures stay like they are. However, she is dealing with chronic rejection. It’s scary stuff. May God give her many good days of life, fun, and memories and I pray we don’t take them for granted. We are thankful to God, her donor and family, and her medical team for the time we do get to cherish with her for however long that is. Her quality of life right now is still so much better than it ever was before transplant. As we continue to walk this road, I’m very often recalling to mind this passage (although probably not often enough):

““Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?”

““Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”
‭‭Matthew‬ ‭6‬:‭25-27;34‬ ‭‬