July 8 & 9, 2015

I have not posted until today because my hands have literally "been full" for the last 48 hours. The last two days have been really intense. The parenting goals put before us have a high demand of hands on work and learning. Doernbecher gave Rachel and I a 3 inch binder full of new tasks for us to get discharged. The announcement came yesterday that Steele would try and be discharged on Friday, July 10th! This timeline is pretty rigorous with all the training that Rachel and I are taking on to ensure his care and transition at home. We were handed a sheet with a flow chart on it that has been labeled as the "Discharge Train". On this train, there are about 40 performance tasks that Rachel and I have to demonstrate to the nursing staff before we can escort him home. It feels more like a train wreck at the moment, Here's the shortlist:

1. Placing a Nasogastric Tube into his stomach. (I needed to see a Cardiologist after that one, whew!!)
2. Feeding and delivery of medications through the tube
3. Recording his feedings, weight and Oxygen Saturation numbers every 3 hours
4. CPR
5. Identify all his medications and when they are required to be administered
6. Identify all the visual and physical "Red Flags"
7. Car seat oxygen test. Steele has to be belted into the seat while on a monitor in the hospital before the car ride home.
8. Try and rest in between about 30 other tasks that I can't remember at this moment.

The correct name for this period between the first and second surgery is called "Interstage". His heart and vascular system are really fragile and he will need a lot of recording and reporting performed by Rachel and I. Parents and Doctors communicate on a weekly basis that will show progress or he will have to come back for additional care. It's all very overwhelming at this point, but we can handle it. I'm a little nervous about leaving for the week, we had not planned on Steele making such a quick recovery and discharge. He's a rockstar and is doing very well.

I want to give a BIG shout out to Jocelyn Gary, Renee Enna and Lauren Kelly for all the painting, cleaning and organization of our SE home. These wonderful ladies have taken a ton of stress off of me by all the hard work. The nursery looks fantastic!