A+ Afternoon

We have returned for dinner after a long but very happy afternoon with Wren. When I went in after lunch I was shocked to see his LAPs reading "8". I checked the line and asked the nurse about it. She speculated that it was due to the placement of the feed and monitor - if it is above the height of the breastbone it can misread. We altered the setup but there was no change. It was EIGHT! Here is the monitor with the LAP in the bottom row.



He slept for a short while longer and then woke up and nursed and then played for an hour or so. The whole time he was reading 14 and under.

We played with the big mylar balloon Josh bought him and some of the new toys, including a stretchy rubber centipede. We looked at a pile of family photos we brought and he ate lunch of grapes, strawberries and cheese I brought from home, poking the fruit on a toothpick I had found in the drawer at home. Every since we discovered the sample trays at Whole Foods he has loved to poke eat his food.

Here he is with the popsicle from this morning and the new mylar balloon he likes to kick with his "snake". His snake is the new code for the puls-ox on his toe which he used to fight until it was given an identity by Josh.



Despite our best efforts, Wren could not go to sleep and at that point Josh arrived to sing. We sang for 30 minutes but he had still not slept again so we assumed he was in pain and gave him Torodol (a scheduled dose). He tried to sleep but was still uncomfortable so received Ativan an hour later. Then he kind of got goofy and we think he had a mild drug interaction. He was very tired but didn't sleep and was still awake when dinner arrived.

He ate mac and cheese, some beans and some graham crackers as well as the mango smoothie we brought for him. He has a regular snack bar in the nourishment room fridge - all his things with little stickers on to brand them his own.

Eventually it was 6.30pm and we wanted to head home for dinner. Shift change was coming so we left him awake but goofy with nurse Chris. We hope she managed to put him to sleep by singing or drugging.

We shall head back as soon as we have recovered with our pizza (now baking) and salad (with garden tomatoes).

I feel a lot more hopeful today - the glitches seem to be reduced and Wren was very much more himself, the outbursts were fewer and even when he was in his highest tantrum the LAPs were only in the low 30s.

Moving to the floor
I have asked a few nurses when they think Wren will be ready to head to the 3rd Floor. All have said by Wednesday - or even Tuesday PM if he continues like this. The move to the floor seems to be driven both by being stable and by the need for post-op beds. There is only one surgery Monday (2 surgeons are away) but a few on Tuesday. Wren may be moved out but is 4th in line for a Ward Bed. At the moment, Ward beds are more scarce than CVICU beds, so that may delay things.

The CVICU Neighborhood
I spoke with the family of the 8 year old girl with ToF. They were saying how much harder it was this time compared to her previous 2 surgeries. The issues of fear and knowing what is going on is very hard. I confess I think that heart surgery is difficult at any age. If you are 2 you don't know what is going on and that is your complaint. Come on a few years and its all about anticipation. Still, the 15 year old with the syringe in his earlobe is enough to give anyone hope.