Since the holiday weekend, Jonah has made excellent progress. He is taking more formula by mouth each day, continuous ND feeds thru the night, and all the smiles during the day. That’s our Jonah!

 

Today, Mom and Dad received home care education at Jonah’s bedside to practice and ensure Jonah’s precise medication administration and line sanitization can be well managed when he returns home. For Sean, this was just another day at the office. For Danielle, this was nuts… thought of bringing a potato to practice administering a shot. Instead, practiced on a stuffed shark and then gave Jonah the real deal. All parties survived!

 

Have we mentioned Jonah’s smiles? Y’all, he is so happy during the day and with just a twinkle of his eyes can brighten everyone’s  day. 

 

Over the next few days, Sean will work with the Georgetown team to finesse Jonah’s medication doses, do a 24-hour test run to demonstrate we can manage Jonah’s recovery at home, and *hopefully* resolve Jonah’s nighttime sleep thru his continuous tube feed.

 

Meanwhile, Danielle will ensure all medications and medical supplies arrive in time and as ordered. She will hold back tears and put on the biggest smile as Caleb goes to his first day of preschool. She must also finish all her home projects while Juju and her shadow, Caleb, sterilize the home. There will be balloons and a homemade a banner.

 

There are many big days in a BA baby’s life, and post-transplant discharge is one of them. Yes, we will return to Georgetown twice a week for weeks so Jonah can be seen by a hepatologist and have labs drawn — if you need food recommendations, Sean can be your personal Yelp advisor — but that first walk out as an inpatient is a major milestone!

 

Please pray that Jonah continues to progress well, gain weight, and returns home on Monday.

 

“Rejoice in the Lord always.” Philippians 4:4 (Caleb’s memory verse for the week)