End of Post-Op Day 2

Today was certainly better than yesterday as far as how Harlie looks.



I was really hoping she'd start to wake up sometime today, but as of 5:45pm she still hasn't woken up. At one point she sat up in the bed and opened her eyes, but she wasn't focusing on me. She was just staring at nothing. I will be so glad to see "her" again and I hope that will be soon.

They gave her some Pedialyte today. They started with 100 mls (just over three ounces) to see if she tolerated that okay. While she hasn't thrown up, she's now tachypneic (breathing too fast). So, I'm not sure what they want to do. She's on Lasix (a diuretic to help her get rid of extra fluid). Maybe her body can't handle the fluid yet. I don't know. I forget that's all connected. We dealt with that a lot for the first eight months of her life, but not since then.

Unfortunately her chest tubes have drained a lot today. In the past 10 hours they have drained more than double what they drained in the previous 24 hours. Her surgeon came around today and I asked him if that could be because she moved around so much yesterday. He said that it didn't necessarily have anything to do with the fact that she moved around, it's just the way her tissues are weeping (yuck). He said that moving around might release the fluid that pools in different areas of her chest, but that it doesn't produce more bleeding.

She's on 60% oxygen and her sats are still only 68% (a normal person's sats are close to 100%). Granted her baseline before this surgery was anywhere from the high 70s to the mid 80s - on room air!!! So to see her on 60% oxygen (which is a lot - room air is 21%) and see her sats still so low, is a little unsettling. But they tell me they will come back up since the surgery she had has nothing to do with her oxygenation. And sometimes it doesn't really matter how much oxygen you give a cardiac patient - the heart can only do what it can do despite the amount of oxygen you give.

Since she didn't get the Fontan, we know that in time her sats will decrease. The only blood that goes to her lungs is from her head then after that blood gets oxygen, it goes to her heart and mixes with the rest of the blood from her body and that's how the rest of the body gets it's oxygen. When you're a baby, your head is large in proportion to the rest of your body. As she grows, her body will become bigger, making it harder and harder for the small amount of blood from her head to provide enough oxygen. We'll just have to see how long she can go before that becomes a problem. Which is one reason why I hate having this hanging over our head for another year or two!

Anyway, it is now 9:35pm and when I called her nurse to ask how she was doing she told me that they are putting her back on CPAP (helps you breathe) because she is still breathing too fast and her lungs are sounding junky and wet. That's what happens when her body can't handle the fluid. So, this is definitely a step backwards. But hopefully after a night with some help breathing it will give her a break and she'll be better tomorrow.

Overall, we didn't make any progress today. She's draining more blood than we would like, she's back on CPAP, she had a fever earlier (they are running cultures, but hopefully it's nothing to worry about), and she's more sleepy than they would like.

She's also having problems with her left eye. When she is really, really sleepy, she can't fully shut her left eye. Normally that's not a big deal because she is a belly sleeper, so I'm sure it gets shut by her sleeping on it, and she only sleeps for 10 or 11 hours at most. But, she's been essentially sleeping since Monday morning and her eye has gotten all dry. They have been putting some ointment in it, but it looks very irritated and now it has this gross film over it and we can't seem to get it off. So, they said if it doesn't look better by the morning, they are going to get someone from opthamology to come and see her.

Oh, we had one of the best nurses ever today. And I am so glad because we are getting her tomorrow, too! And Tom's mom is bringing Murphy to come and visit. They are taking the train (which I hope he will get a big kick out of) and Tom and I are going to take him to the zoo (or a museum depending on the weather) and the Nationals baseball game while Tom's mom sits with Harlie. The hospital got us the tickets for the baseball game - for free! How nice is that?! We are hoping that if Murphy gets to do something fun every time Harlie is in the hospital up here, that it won't be so scary for him. I don't know if he'll get to visit Harlie, I forgot to ask. I think he has to be screened or something. I guess I'll find out tomorrow.

I will update again in the morning after rounds. Thank you!