I want to start this off by saying for our new readers that Olivia is the kid who never had a setback or a complication. She’s the kid that proves everyone wrong all the time.

Until this time …

We had a GREAT day … a very good day. She was stable all day. Slept well. Woke up and played with us.

Then around 7PM she decided I was too relaxed and it was time to kick things up a notch. She started crying. Asked me to pick her up — I would PAY to be able to but with the multiple chest tubes plus an IV going into her heart … it’s just not possible. She just wouldn’t settle down. Said she was going to throw up. We’re of course at the point where the nurses are switching shifts so it’s a bit harder to find someone.

We find someone who helps us out. Finds our nurse who brings in her replacement who is TOM. Tom is the nurse who took care of Olivia after her shunt 3+ years ago. He’s AWESOME and I’m so glad he’s on tonight.

He takes her temp: 102.1. Gives her tylenol. He figures out a way to calm her down. He notices a rash developing that I had noticed just moments earlier. He immediately gets the drs involved. We’re in good hands tonight.

They gave her motrin as well. Her breathing is coming down a bit. She’s on a LOT of oxygen right now. Her coloring isn’t great. They think it’s related to the fever so we’re going to see how she does.

She’s stable. Me? I’m having my moments where I am and then I’m not. I’m scared - I’m SO not used to her being like this.

We’re having a pretty good afternoon. They did another chest xray because her breathing has been labored. Turns out her chest is fine - but she has a belly full of gas. So we’re hoping she can pass that quickly and feel better.

They gave her another dose of lasix and turned up her Oxygen to help her not have to work so hard.

She had some more juice and then another popsicle. She’s been cute this afternoon … she told me she wants to be a ballerina when she grows up and she will wear underwear on her head at her coming home party. So we’re seeing a little personality shining through. Even the eyebrows are making a comeback as she’s using them to show expression again.

She is working hard at blowing bubbles … we spent a good ten minutes doing that this afternoon. Now she’s resting again although she just woke up in a start and started singing along with the TV “Backyardigans” theme. It was adorable!!! She keeps pulling off the oxygen to smell rahrah and then putting the oxygen back on.

So “no news is good news”. Dr. Heller will be stopping by later today and I’m looking forward to seeing her. She always knows what to say to make us feel better.

Just had rounds. They are very pleased with Olivia’s turnaround since last night. Even Dr. Mello is starting to talk about when we’re going to move to the floor (upstairs and out of ICU) which should be on Thursday or Friday at the earliest.

The plan for today is to wean her off the oxygen. We can start to give her clear fluids as she tolerates it. She had one container of apple juice and was so happy she practically spilled it. She slept for a good long while after that apple juice. She’s eating a grape popsicle and in her glory.

They want to remove the foli cath as soon as we can because it can be a source of infection ;). I’m sure she’ll be happy to have that removed but that introduces the issue of her figuring out she has a diaper on which ought to make her REALLY happy …

They JUST turned off the dopamine and plan on cutting down her milirinone today.

So it’s March 25. Olivia had a good night overall. Her drainage is a MUCH better color this am (they want it the color of straw - not bloody like it was yesterday).

They gave her a one time dose of lasix (a diuretic) which made her pee out 200+ cc. They just came by to take another chest xray and hopefully we will see some improvement on that junk on the left side of her chest.

Olivia is not happy with the oxygen in her nose. We try and give her a break when we can but her oxygen drops to 89% without it. With it she’s running 97%. Talk about beautiful pink toes and fingers.

I think along with my sister that they were allowing Olivia to tell them when she had the pain and it appears that Olivia has a very high pain tolerance. So she went a very long time yesterday without pain meds which turned out to be a not so good thing as she had a very hard time settling down. Our overnight nurse Tricia has been very proactive at giving her morphine and attavan regularly which seems to make a difference in my girl’s temperament. She still wants to eat / drink but at least she’s reasonable when I tell her no.

I got some sleep last night. Went to bed around midnight and woke up at 4:15 and then 5AM. I’ll take a nap once Arnie gets here. I hate missing the action relating to Olivia’s care … I want to know the plan and all that. Controlling? Me?

I’m hoping today is better than late yesterday when I could tell Dr. Mello was concerned about Olivia’s drainage. I was starting to freak but trying to stay calm. At one point we had two cardiologists (Dr. Lapuk, Dr. Heller - who stopped in on her way HOME), plus Dr. Mello, Katie and two nurses all in her room at once. I think this is the “sickest” I’ve ever seen Olivia. The beautiful thing was as “sick” as she was - she was still stable enough to demand drink, food and she wasn’t afraid to tell Dr. Mello when he was blocking the tv. LOL That’s my girlie!

I’ll update again later after rounds when we have a plan of attack for the day.