Friday, September 10, 2010

Today I got to learn more about Moderate Care. Here, the Nurse Practioners run the show. There are Pediatric Cardiologists around, but if the heart is working ok, you don't see them. I had seen the Nurse Practioners in the PCTU, but they just listened and typed on laptops during rounds. It is nice to know that they know all of Caleb's history, not just what he is doing right now.

From now on, the plan is to get the diuretics and oxygen to an acceptable level, work on feeding and get everything else to stay the same. In the PCTU, you are constantly trying to change things. In Moderate Care and on the floor, you are trying to get things to stay the same.

Caleb needed more blood today. The Nurse Practioner (NP) said that it may be because they are always drawing blood from him. The last time he had blood was on Sunday, so at least we are getting further and further between infusions. If you give blood, please pat yourself on the back. You are helping little babies get better! Caleb still needs a newborn blood screen to determine if he has any of the disorders that can be found in this screen (metabolic disorders, etc). His first screen was taken before his first surgery, but somehow it got mislabeled. He has to wait for seven days after a blood transfusion so they are actually checking his blood, not someone else's and he has never gone that long. Maybe this time.

The NP warned me that after the PCTU, progress seems slow because the goal is now steady, not changing. We measure progress over days, not day to day. They do seem happy with his progress, but she is aware of the "Caleb Factor" and has taken that into account.

He is throwing up some of his breastmilk, but they think that it is because of the large amount of change yesterday. He was doing much better today, but still not 100%. They think he just needs some time to settle. Right now, he gets 40 mL of fortified breast milk, every two hours, over a one hour period through his NG tube. Basically, it is eat for an hour, off for an hour. His final goal is 65 mL every three hours, preferably over a shorter period. If he still needs an hour, we will have to take a pump home.

He is still not weaned off the oxygen. He is at 1/8 of a liter. They think that he probably doesn't need the oxygen as much as he needs the pressure to keep his lungs inflated. Hopefully, he just needs time to get stronger and take deeper breaths. He is close, just not quite there.

I asked the NP about the big picture and whether we are looking at one week or six weeks to go home. She is thinking a couple of weeks. Hopefully, she considered Caleb's aversion to change. We can deal with a couple of weeks. Maybe he will surprise us in a good way!