We interrupt Liver Awareness Month celebrations and fundraising announcements for an update on Jonah’s health and request for immediate prayers. This journey is more than COTA fundraising events and t-shirts. It’s Jonah’s life with BA!

First, let us share that Jonah continues to be the brightest light. He is so smiley, cackles at his brother, Army-crawls all over the place, enjoys the infamous baby puffs, and is gaining weight appropriately.

Unlike most babes, Jonah has regular doctor appointments and home nurse visits — currently on a weekly basis. Yesterday’s appointment uncovered a few concerns. 

1. Jonah’s Tacro level is low for the second week in a row. Tacro is the life-long immunosuppressant medication that works to make sure Jonah’s body does not attack his new liver (very important). In addition, Jonah’s liver enzymes are elevated. The combination concerns Jonah’s doctors, as it may indicate early rejection. Fear not, when detected early, rejection is treatable. Jonah had follow-up bloodwork this morning, and we are actively waiting on the results. If his liver enzymes have significantly increased since yesterday, Jonah will be admitted to Georgetown this weekend for a liver biopsy. If the levels are stagnant, he’ll likely do another set of labs early next week.
2. We mentioned the importance of an immunosuppressant, but the body also makes its own antibodies to fight infections and protect all organs. Jonah’s IgG level is low and requires an IVIG infusion to be administered early next week. We are thankful this is treatable and tested weekly to ensure Jonah does not catch any infections. Unfortunately, until his IgG level is stable, we cannot have Jonah’s PICC line removed from his right arm. It’s not terrible, but it would give him a bit more mobility, a nicer bath time, and a decrease in medications and nurse visits.
3. Finally, we’re working on having Jonah take all his medications (12) by mouth so we can have his NG tube removed. Unfortunately, he has learned all our tricks and is not having it. While the NG tube is not the most aesthetically pleasing, it also causes discomfort and gagging for Jonah – not great. The gagging also leads to spitting up medications like Tacro, which are so important to absorb. We’ll give him another week before switching some meds to capsules/powders rather than flavored liquids. Pray for us, as mama is on a mission to have Nigel 2.0 out by the end of this month!

For those who are local, we hope to see you at Pasta with a Purpose on Tuesday, October 19, but most importantly, we ask all of our supporters to pray for God’s protection of Jonah’s liver.

“Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, ‘He is my refuge and my fortress, my God, in whom I trust.’ Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalm 91:1-4