Wednesday, July 22, 2009


Hi everyone, sorry to be out of touch but the internet has been difficult to access today. J.J.'s doing really well. He's hard to keep sedated, for some reason he's that type! He is on drugs that stop him from moving but we can tell by his blood pressure whether he is awake or asleep. He slept a good part of the night and started waking up around 5:30. We have had headphones on him the whole time, listening to some of his favourite shows and music. He's listening to Randy right now!

Billy stayed up with him all night and I came in at 6:30. Billy slept about 7 hrs and has come in now, I'm off for a nap and hopefully Billy gets another nap before doing the night shift.

It's strange to feel comfortable in such a creepy place but having J.J. here makes it seem so normal. It is definitely an emotional place, seeing what all of the other parents are going through and the tough things they're facing, including some of the same things that we faced when J.J. was a baby. It's been really great to see so many old friends... we got to know a lot of nurses, doctors and respiratory therapists since we sat in here all day everyday and a good part of the night for 5 mos! Everyone is so shocked at J.J.'s size since he was just a little pipsqueak when we were here last. Ironically, our nurse today has only been here since April so she's feeling a little out of the loop!

They've gone back and forth on when they can close J.J.'s sternum/chest bone. There's been some juggling in the OR and it sounds like he can get it zipped up this evening or tomorrow. Possibly he can be extubated (taken off of the breathing machine) tomorrow then too.

He is still on a pacemaker and he will need to stay in the ICU until his heart rhythm sorts itself out. Before they were just pacing the atriums but now they are giving the ventricles back up when it's needed too. His heart has to re-learn pathways for electricity because they have been disrupted with the surgery and there might be some stitches in the way of some of the old pathways. His heart rhythm will have changed a bit because they closed the hole between the two atriums where some of the blue/de-oxygenated blood used to slosh back and forth a bit.

The oxygen levels in his blood may still be in the 90% range (people are typically at 100%) even though they closed the hole in his heart (ASD). J.J. still has a bit of a VQ mismatch, which means that he's not matching the blood flow with the airflow to his lungs. His upper right lung is hyper-inflated so air gets trapped there a bit. When he was a baby that lung got blood but not enough air and the other lung got air but not enough blood.

One of his doctors who usually tends to be more conservative and protective of J.J. is very happy with him and thinks things are progressing well, so if HE's happy, that's a good sign!

Once J.J. gets off of the breathing machine he can wake up a bit more. He's a feisty one so here's hoping he won't be grumpy about all of these tubes when he wakes up!

Thanks again everyone for your love and support! Love K

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