Post Fontan OHSU PICU & Floor Day 6 and 7

There's a point when you reach a strange balance in time. Time meaning what day, what time, where is the sun? Yes, that is me folks. The PICU has spun its web around my brain. The focus is always the same, Mr.Steele. This journal entry is at the point of exhaustion and no time reference. I feel that writing comes naturally if you just let it out. I hope Steele will read this someday.

When you check in to the hospital for long term care, you must submit to the fact that you may not leave as planned or even live your life as planned, I guess that is the point. Hospitals have an insular way of deflecting the "day to day" as we know it. The only way I know it is day or night is by a shift change in staffing in our room. There are waves of introductions, "I am.., "here to..", "???". I always remember one thing when you cannot remember. Be cool, courteous, and calm.
Machines are blipping, lights are blinking, alarms are notifying. The last thing you want to do is be a jerk. I did not have an incident, but I have been tested in the last 2 days.

Okay, enough with the b.s. school teacher. Let's get down to business.

The last entry was all about the pacing wires. The Cardiology team decided to take him off the battery yesterday morning (12/17) around 8am. This was a test on his single ventricle to take a hold its own natural rhythm. The first hour was out of sync, but then the nodes starting getting along. His physiology took over and was doing fine. Remember, trust in the team, right?

A new issue came up with the drainage off his chest tubes from surgery. These drain tubes are incised into the abdomen cavity to let excessive fluids off so he can breath and let the single ventricle do it's work. These are essential to recovery and getting your organs back to "less diaereses" (swollen with fluid). In addition to the fluid coming off from surgery, you are trying to get the 3 year old to eat solid foods. Steele's nutrition is now all in his mouth, but he felt terrible from all the narcotics and pain from swallowing food. I won't go into detail, but this was not going very smoothly.

Steele was put on a "low fat" diet for about 24 hours because his chest tubes were draining essential fats for his body. There were several ongoing conversations about the lab tests, and was eating this tasteless menu for about 12hrs. I advocated to get him off the diet because the food is tasteless and he refused to eat any of it. We started bringing in familiar snacks from home, which he gladly accepted. His meal intake is all about calories, so you have to look at the nutritional information on the packaging and run the math calculations, etc....good times.

Early Tuesday morning, he was released from the PICU! Steele and I packed up our gear and moved to 9 South in Doernbecher. Now we await the ween off oxygen and medications, removal of pacing wires and chest tubes, then home. We have not been given an date, but hopefully by Christmas Eve.

Enjoying my new room out of PICU!