Friday, January 1, 2010


So for those you haven't had their child have major heart surgery let me tell you how progress is measured.

1. Stats
You have no idea how many numbers they keep on these kids. In the room is a monitor that has 3-6 numbers: Heart Rate, Blood Pressure, Blood Oxygenation, Fluid in the heart, respiratory rate and CO2. As a parent you always have some number you want to go up and down. Believe me you stare at those numbers thinking you can change them if you look long enough. For us that number was the Oxygenation, because of the transposition, then heart rate, because of the heart rate spikes from svt. Its easy to get stat envy in the PICU as we talk to other parents and hear their stats.

2. How many tube are coming out of the body
Judah started with around 11. 3 for blood drainage, 5 to get medicine into the body, 1 to measure heart pressure, 1 to pee, and 1 to pace his heart. Ohh and a breathing tube. I feel like I'm there is a song called "The PICU twelve tubes of christmas."

3 How many medications is he on?
Coming out of surgery Judah had around eight continuos medication running. Some for his heart, some for pain, some to sure he was getting enough nutrition, some to pump fluids in and some to make sure those fluids come out.

Its funny how your mind obsesses over this things. Better things get the closer you are to home.

So at the beginning of the day his stats were stable but his heart rate was a bit high, he had 9 tubes coming out of him (he got the blood drainable tubes out yesterday), 5 drugs pumping into him.

In order to open his lungs we need to do a procedure to clean then out because they couldn't get enough gunk out they usual ways. They needed to do this so he could get of the ventilator. If someone is on the ventilator too long then infection can occur which is not good for anyone let alone a baby ..... that just had heart surgery. The heart can be fixed but if the lungs develop a problem its almost as bad. The procedure work on cleaning out most of this lungs. You can ask me (Matthew) about what they did when you want to hear a scary story.

So because they were able to clean most of the lung out they took him off the breathing tube which is another major milestone. Although they did have to put him on a CPAP which blows air down his nose to keep the dirty part of the lung open so he can work it out his self. While not breathing entirely on his own he is in a much better situation now and far less likely for infection. BTW the lungs sewage system is crazy cool talk to me when you want your mind blown. So one tube down. He also go his catheter for peeing taken out and his arterial line on the right arm. As we stand now we just have 4 tubes for medicine and the pacer wires for his heart left in.

He also did better on his medicine and stats. Currently his only has 1 thing going into him continuously which makes sure he has the right balance of nutrients in his body. They will stop this once they feed him more. All the heart and pain medicines have stopped. He does get various ad hoc medication but those are mostly one time things. He also only has 4 stats left to look at and they are all very stable.

So hopefully they will take the CPAP off sometime tomorrow so he will be breathing completely on his own, take out some more tubes out and start feeding him breast milk. If he tolerates all of those things the we could move out of the PICU and out with the general population. We'll probably have to spend a few days there also. Hopefully we'll be there by Monday.

Ohhh .... Since most of the tubes were removed Kirsten got to hold him for the first time since the surgery which made her vary happy. And they put clothes on him for the first time in his life.



  1. We can empathize with the number watching - there is some comfort in the midst of everything to walk in and look at the numbers to assure yourself they are okay and/or getting better. When you move out to the general population they start taking away the sensors and the wires and you have to convince yourself they're okay even without the stat report.

  2. Jay and I were talking last night that there is a special "brother/sisterhood" of parents who have children who have spent time in a NICU/PICU. The number game is one that is irrisitable. I would move myself in the room if the nurses moved the monitors just so I could continue to watch. I'm so glad Kristen got to hold Judah; that's a wonderful feeling and a great sign. Praise God that he is off the ventilator and on CPAP--moving in the right direction! Since I know that you'll be watching those numbers...praying for better numbers everyday.