Saturday evening update from Josh

Shannon and I have now settled into a Wren-monitoring rotation.  We eat breakfast and lunch together, but otherwise one is in the CVICU with him while the other naps or otherwise relaxes.  We'll leave him at the shift change at 7 when we have to leave the room anyway and he'll hopefully keep close to his normal sleep schedule and be willing to stay asleep for the night.  He certainly slept much better this afternoon around his normal nap time.

The nursing staff is all great and well qualified to take care of him, but there's definitely a difference when we're there.  We're more immediately responsive (since we're about a foot away from him in a chair) when he stirs or cries out, and we're more available to feed him sugarwater or read books to him for long stretches when he's conscious.  It makes enough of a difference that we're trying to be there as much as possible during the day.

Concerns

Wren's left atrial pressure is still high.  It was expected to be high and will likely always be high for him because of his condition.  Normal is apparently something below 10, but Dr Hanley wants Wren's to stay somewhere in the 16-20 range.  Through last night and this morning his pressure was comfortably in the mid teens, spiking up above 20 only when he got very agitated (unforunately frequent).  But lowering pressure is a side effect of one of his drugs (I forget whether it was the Versed or the Ativan) and once the drug was wearing off he was hovering at 20 even when fast asleep, so he's been redosed.  According to the nurse, the increased pressure could be a temporary side effect of swelling and inflammation in the heart after surgery, so hopefully it will drop down on its own.  I don't know what the next step is if it doesn't.

Wren still has a dopey left eyelid, and we're still worried about the possibility that he had a stroke.  The staff doesn't seem too worried about it and he doesn't seem to have any other symptoms, so it may just be idle worrying.

Wren's still full of tubes, and he hates each and every one of them.  If they're not itching him then they're getting caught on his feet, or they're sore, or he's rolling over and occluding them.  I measure progress in the number of lines that get pulled out of him, and so far the only progress on that front has been the breathing and NG tubes.

Progress

Through the morning, he was getting increasingly demanding for 'numnums' when he woke up, which was a binky dipped in sugar-water.  Feeding a near-2-year-old on drips off a binky is painstaking and unsatisfying work.  But around 5 hours after the tubes were pulled he was okay for clear liquids.  I asked the nurse if this included apple juice, and although she wasn't too excited (it's a little acidic), Wren was awake at the time and started chanting 'apple juice apple juice', so that was decided.  He guzzled half a can in a few seconds and naturally threw it back up shortly thereafter.  So he was limited to sips of water subsequently.

He's also becoming more familiar with the nurses and they're having an easier time settling him down, which might mean Shannon and I can be a little more relaxed when we're away from him for dinner.