He’s home! God is good!
Jonah and Sean returned home on Monday, as planned. After a thorough review of all his home medications, the sweet nurses celebrated Jonah’s departure with noisemakers, a green cape, and a superhero mask. Even some of the other pediatric patients clapped from their rooms.
Caleb was so excited to greet Jonah and Daddy, and very proud of his banner and big balloons from the store. Jonah is even more obsessed and tickled by Caleb than ever! His feet start kicking and his head swivels back and forth as he tries to keep up with his sweet big brother. What a joy to have the family back together under one roof.
Jonah came home with a PICC line and NG tube. The former will help avoid pricks for his twice-a-week bloodwork appointments. The latter was originally placed to help with supplementing his formula feeds; however, he is eating SO MUCH by mouth that the tube is no longer needed. For now, we are using it to administer his many medications as we work on a schedule that allows him to tolerate his long-term medications by mouth.
On the first night home, Jonah also had the longest stretch of sleep in his life! Hallelujah. We jumped up when he woke and couldn’t believe the time. Pray that this continues – for the whole family’s sake… We would tell you that night two was great, but we ran into a few snafus.
First, mom and dad experimented with administering one of his medications through the NG tube. In fairness, this particular medication was administered that way in the hospital. The only problem was the form of the medication differed in the hospital and the one at home clogged the NG tube. What does that mean, you ask? We were unable to administer the rest of his medications through the tube and had to try to get Jonah to take them by mouth… late at night, while he was tired, and not in the mood. Thankfully, he took what was needed, and the Hepatologists at Georgetown said we should try to find a local place ASAP but did not have to go to the Emergency Department to have the tube replaced and confirmed by x-ray.
As God would have it, He had an even better morning plan for us. As soon as the NG saga was temporarily resolved for the evening, Georgetown called us back. Turns out a child on the Pediatric Transplant floor had chickenpox! Chickenpox is highly contagious, and while the child never left their room, the nurses go in and out, and the air on the floor is not specially filtered. Furthermore, transplant kids cannot receive vaccines just as simply as typical kids. We were asked to bring Jonah in on Wednesday to receive a special vaccine for transplant kids, and the team would replace his NG tube while conducting his original Thursday follow-up appointment. Two birds, one stone. You can’t make this stuff up!
Unfortunately for Jonah’s improved sleep, we had to wake him from a perfect slumber to give him meds and food before sitting in rush-hour traffic. We’ll try again tonight.
Snafus aside, we are adjusting to post-transplant life and enjoying our time back together. It’s truly miraculous how well Jonah is doing and how he keeps the biggest smile on his face throughout the journey. He is a fighter, and while he is still little, he is so strong!
We continue to pray for a successful recovery, protection from viruses, and prioritized time with one another.
“Great is the Lord and most worthy of praise; His greatness no one can fathom.” Psalm 145:3
