Post-Op Day 5 - last update

Today we had a visitor - my friend Kim. She definitely made the day so much better. And her daughters (Katie and Sadie) made these totally awesome get well cards for Harlie. I'm so mad I didn't take a picture today, so I could show you. I will do that tomorrow, though so you can see. Katie just finished up Kindergarten, and she did such a great job on her card. It is so cute!

Unfortunately, it's been another day, and no improvement. And as I left her tonight and watched her breathe, I would have to say that not only is her respiratory status not improving, it is declining.

Not only did they have to raise her settings on CPAP, they couldn't do another trial to get her off. And they said they were actually going to put her on a rate tonight. Which I believe (I don't have any real experience with ventilation as her time on it as always been so brief) means that she's actually being ventilated tonight (the machine will breathe for her). Again, not the direction in which we want to go.

I spoke with the doctor today about her x-rays. He tried to show me that they weren't that bad. And that there was no evidence of fluid in her chest cavity. Of course, I had to tell him that gives me no comfort. Never in all my experience with Harlie - after HUNDREDS of x-rays - has an x-ray actually diagnosed anything. The x-ray might push you in a direction - but it's the x-ray, coupled with other symptoms and further tests, that actually gets us anywhere.

Anyway, while her x-rays aren't that bad, she's getting worse (again, how much can I believe the x-rays?). Here's a quick video I took of her sleeping today. Notice how long her expiratory length is (especially about 20 seconds into it). And this is on the higher settings of the CPAP.



She didn't sleep that well today. But it is hard to sleep when you're working so hard to breathe.

The last time I saw her breathe like this was when she had a chylothorax (fluid in the chest cavity surrounding the lungs making it very hard to breathe). While I'm terrified of that - I would rather it be that than something worse. I know what the treatment is for that. And while lengthy, it is completely recoverable. As long as you know it is there. Thinking about her declining and not knowing what's going on is WAY too scary - and I just don't want to go there. Period.

Oh, I forgot to mention in my last update that they took some respiratory cultures yesterday and it appears to be growing something. So, instead of waiting to see exactly what it is (might take several days) they went on ahead and started her on an IV antibiotic. While she felt very warm to me, I don't think she had a fever today.

I had to help the nurse change her arterial line dressing today. She said it looked terrible and was a breeding ground for an infection. It was not fun. And, just for the record, the smell of blood is NOT pleasant. The nurse we had yesterday said that she heard that the arterial lines can be very painful. They actually cut down into your wrist and, I guess you could say surgically place the line in your artery. Then they stitch it in place to help keep it from coming out. It was yucky and I had to hold down her arm so she wouldn't go flinging about while the nurse was messing with it. Oh, the things I hate doing to my sweet little girl. I just hope that one day she doesn't hate me for it. I often wonder if she's thinking, "why are you letting them do this to me?" And it kills me.

Oh, I saw Harlie's very first nurse - ever - today. When I was wheeled over (in a wheelchair) the afternoon Harlie was born, Sarah was her nurse. She was her nurse that day shift, and the next. And she remembered us, too. It was so good to talk to her and to talk about those first days. Oh, they were so hard. I feel so lucky that we had her to help us during that time. What a difference she made! Thanks Sarah!

I know I sound like a broken record - BUT - hopefully tomorrow will be better. Hopefully we'll start to see things turn around - for good.

And Kim, thank you so much for coming to visit us. I know it's not convenient in any way, shape or form. So, please know you helped a lot today!

I'll update again after rounds in the am!

Thank you,
Christy