Skyler

She’s back! Not 100%, but this morning when I arrived in her room, she was wide awake and greeted me with the sweetest smile I think I’ve ever seen. It wasn’t the biggest smile ever, but when you haven’t seen your baby’s smile in so long, any curve of the lips and sparkle in the…

Well, we just got some bad news. The ICU doc came in and said that her lungs are improving, but the results of yesterdays sonogram showed that her heart function is not improving nearly as much as it should. They are going to start some different heart medications to help improve her heart function. We…

By 1 a.m. this morning, Skyler’s blood pressure meds were turned off, leaving only the Milrinone running at a low dose. Last night they went ahead and removed the oxygen tubes in her nose since her oxygen had been safely off for several hours. Ronnie was able to feed her from a bottle last night…

Skyler’s Nitroglycerine drip has been off since this afternoon, and her Nitroprusside is now down to the lowest dosage! She’s still on the Milrinone but it’s always been at the lowest dosage, and it will be the last one to go. They also turned her oxygen completely off a little bit ago and she’s breathing…

I forgot to mention earlier that they took the drain out of her chest today. That was the tube that came out from her incision area to drain extra blood and fluid from the surgery. Hopefully that will help her comfort level also, not having a tube in her side. Ronnie and I came back…

Apparently Skyler is one of feistiest kids on this floor, according to one of her respiratory therapists. I’ve mentioned how she hates her breathing treatments, but let me describe it in a little more detail. They take her oxygen mask and attach this black bag/balloon thing to it and then they squeeze the baloon thing…

Skyler just gave us a major scare. We had to give her the oral heart medication on an empty stomach, and she took that just fine. We had taken her out of the bed so Ronnie could hold her and feed her comfortably. Then she had to take some potassium orally since the Lasix lowers…

We came back from lunch and Skyler is sleeping soundly. She just fell asleep. At the same time we are walking into the room, two ladies who introduced themselves as “Music Therapy” were walking in to do therapy with Sky’s roommate. What the heck? They are playing the guitar and singing to him. Of course,…

We aren’t getting any closer to getting off the meds. We’re just getting farther away. They increased Skyler’s heart meds again around midnight last night. They also called for a new longer lasting pain medication to help control her comfort so maybe she could take less Morphine. We don’t want to have to battle Morphine…

Just when you think you can relax, something happens to throw things back out of whack. Nothing terrible – Skyler is fine. But all three of us had one of our most stressful days yet of this whole ordeal. The PICU got so full today they had to bring nurses down from the NICU to…