"We need another wardrobe change!"

Grandma Jane reading to Elise. Uncle Don with Elise. Elise in her new Pooh outfit.

Puke, puke, and more puke is what we have dealt with this week. Elise's Aunt Debbie and Uncle Don came to babysit yesterday, and both got puked on. That gave mom and I time to go get a couple new outfits, since we are tired of seeing her in the same ones already. We see them all frequently since she gets changed 4-5 times a day due to vomiting. The doctors are still wanting to increase her Flolan, but are holding off since she is vomiting so bad. We did not have to start an IV the other night, but she is still teetering on the edge of fluid balance. She had another episode yesterday am. The nurses said that at about 4:45am she vomited, coughed, then started to cry and drop her oxygen saturation and heart rate. They had to assist with ventilations, but no chest compressions. It was very disappointing since the Flolan is supposed to stop these episodes. I asked the doctors if this is a bad sign, and they reassure me that they are more interested in the long term "remodeling" effects of the medicine. Meaning that over time the medicine will remodel the vessels in her lungs. They want to her go 2 weeks without any episodes before they will consider letting her go home. Jason and I would feel more comfortable with no episodes for a month or more. But either way, she won't go home until we are comfortable. She is starting to explore with her hands, and look at people and track objects better. We are trying to get her lots of playtime on the floor on her playmat, which she loves! And, we are considering taking her on walks around the unit to get her a change of scenery. I'll post again on Monday. Until then, have a great weekend. Love, Kristin