John came home last night. We had dinner as a family, thanks to Chef Wesley. John was so happy to be in his own bed. 

Dr. Heinle, the surgeon who repaired John’s heart, joined us in the elevator by chance as we were heading home. We appreciate his talent and dedication. John received excellent care from the surgical, cardiac, and medical, nursing, therapy teams at Texas Children’s. We are so grateful. [...]

First, I offer my apologies for not posting yesterday. Scott returned to work, Wes went to school, and it was a busy day at the hospital with John. All of the therapists came by in the morning, which was a little exhausting for John. We were discussing a better way to space out these sessions when the surgical team visited and told us we are likely 24-48 hours within discharge. Yes folks, returning HOME![...]

Happy Thanksgiving to our Canadian friends!

John has been working with therapists today. It’s exhausting but he’s giving it his full effort. The biggest milestone today is the chest tubes were removed. It’s not a pleasant procedure, but a source of pain for him has now been taken away. This is another step towards going home.[...]

Hello all, I have been very busy. I’m home getting some clothes for John. Scott, Wes and John’s Grandparents are with him today. John’s insulin management is back on his Omnipod. And eliminating the need for insulin delivery from the IV means he met the criteria for moving out of intensive care. Yeah! [...]

Thank you all for hanging in there until I had a break to post an update! John is more awake than yesterday. He’s sitting up and eating a little. He’s still dealing with some after effects from surgery of course. We are hoping he’ll feel a little bit more like himself every hour. We will probably be moving out of ICU this weekend. [...]

John is stable and his cardiac output is good. The care team is pleased with his heart’s function at this time. 

John has been coming out of anesthesia yesterday and it’s wearing off. It’s time for lines to come out one by one. A steady stream of therapists, specialists have been performing assessments and helping John recover. Some test results they like, some they don’t and that leads to more tests and more consultatations. I said previously that I won’t post every hill on the roller coaster ride but the last 24 hours ohave been the steep climbs and the sinking feelings of all the possibilities his caregivers must consider. So please continue to pray for his recovery. John and our family do appreciate your support. [...]

John had a restful, comfortable night. His vitals were all relatively stable. The medical team is monitoring him closely and he still has a multitude of lines and tubes in. Those will gradually be reduced starting today with the breathing tube. They backed off on the respirator and John is breathing on his own this morning. The med team likes what they see so the plan is to remove the breathing tube  and the sedation will be less as well. There are more lines to remove but I won’t describe all the bumps in this roller coaster ride. [...]

Fifteen hours ago, John went into the operating room. Some tests were run before his operation truly began. Nevertheless, it was a long day. We spoke with the surgeon just now. He is satisfied with how things went. He described the condition of John’s old valve and it’s clear how necessary it was for John to have it replaced right away.  We will be staying with John in the ICU tonight. He is stable but will be closely monitored. [...]

John came off the heart-lung bypass machine smoothly. The bulk of the work on John’s heart is done. The surgical team will take some precautions to prevent bleeding and complications. They will run tests on his heart function. The surgeon will come talk to us in 1-2 hours and John should be moved to ICU. [...]

John’s surgery is going on as planned. The old aortic valve is out and the new mechanical valve is in. There is more intricate work to do. It may be a few more hours before he is out of the OR. [...]