Day 24

Jen & I made it up for rounds this morning. The doctors were pleased to see that R had another good night and continued to make slow progress. They decided not to scope him this afternoon, fearing that the risk for complications outweighed the benefit of what would be accomplished with the scope.

R has been on a heart rate medication called amiodarone. If you recall, some time back he was weaned from an IV drip to an oral dose only to have a strong negative reaction to it. Today, the cardiology team cut the rate of amiodarone (via IV drip) by 1/2. If all goes well over the weekend, they are going to meet and discuss options for continuing to wean him off of this medication. His heart rate and blood pressure have been stable for three days now. No arrhythmia's or other complications.

On another good note, R continues to have his ventilation settings slowly adjusted lower. This means his lungs are very slowly getting stronger. If R continues to do well, the doctors will put him on the other ventilator on Sunday or Monday. If the switch is made and R can tolerate it well, this would be a wonderful sign of progress. On the other ventilator, R can eventually be brought off of the medication that keeps him paralyzed and sedated. He would be more aware of what was going on around him and we would be able to hold him. We are cautiously optimistic - and very excited!

The bandaging that covers R's surgical site - his incision and old ostomy site - were changed today. This is the first chance in a week or so that we've been able to see how the site looks. His old ostomy site is healing nicely. The incision from the surgery also looked good. They still have not closed the wound entirely due to the pressure it would cause in his little body.

We will have a chance on Saturday to bring the kids up for a visit. The last time they saw R was three weeks ago last Wednesday - the day after his transplant. We are looking forward to being up there as a family. The kids have been remarkable the past few weeks. This has been a lot for them to process and understand. I would ask that you keep them in your prayers as well.

Thank you for taking this journey with us. Your prayers are greatly appreciated! Blessings!