Day 8 - Off the PGE

Erin had a very nice night. No issues, no new IV lines, just really calm and lots of sleep. I was so relieved when I called early this morning.

When I arrived around 8 am, She was lying in her little "next" facing a music player that also plays colored lights. She was totally fascinated by it. It was actually pretty entertaining to watch, as she sucked on her Binky and stared at it. BTW, the name "Binky" came from her first nurse. When I leaned over her, she looked up to see that it was me, and went right back to the fascination with the music player.

Cardiologist Jeff, Attending Jimmy, and Cardiac fellow Jamie came by to talk to me shortly thereafter. We talked about what taking her off the PGE entails. Jeff tells me that as long as her oxygen sat level is above 80, he is fine. Between 75 - 80, he wants another echo cardiogram to see what is going on. Below that, we need to begin thinking about another decision. The PGE was then turned off, and so the waiting game begins. Her oxygen sat levels have varied since turning it off between a low of 78 and a high of 90, mostly hovering around 83 - 84. Sheila and I are both trying hard not to look at the monitor every second, but it is impossible. Her blood gases are still perfect, so that is a very good sign.

While Sheila went to pump, I grabbed Erin to hold in the easy chair. Normally, she fusses a fair amount until she is settled, as she doesn't like being moved. We attributed this to being on PGE, which is like getting a steady dose of the flu. A baby just feels lousy on the drug. This time, she stayed perfectly calm throughout the transfer, even when it took me several tries to get her properly positioned and her head supported. Too many tubes and wires to maneuver around. Once she was in my lap, she exhibited more energy than she has yet. She was squirming around in a positive way, just wanting to look this all around her. When the team came in for rounds, she was craning her head to see behind her where the voices were coming from. She was happy and energetic, which was just thrilling to be a part of.

Right now, she is in Sheila's lap, happily sucking away on Binky while she takes everything in. I took a group of photo's and she was following me with her eyes throughout. She does not like the flash, though!

On the medical side, we have increased her oxygen to 100% to get her airways dilated. She continues to hover in the low 80's.