Well, I was hoping I could start off this post with good news. But, she's pretty much the same as yesterday. She remained on CPAP all night long. During rounds they said that they wanted to start some timed trials to see if she can come off today. The goal was to let her breathe completely on her own for four hours. I think she only made it to three hours before they had to put her back on. And she is still working so hard to breathe! It seems like it's harder for her to exhale than to inhale.
Her oxygen saturation levels are low. Consistently lower than yesterday. Right now she is hovering in the mid-60s! Ugh. That is SO low!!! (a normal persons is close to 100). And when she turns on her left side (the side she prefers of course) she desats down to the low 60s - like 61!!! It's starting to kinda freak me out. I'm wondering if they need to turn up the settings on the CPAP so that it does more work for her. I don't know. I think the doc is going to come in and listen to her again because her nurse said she sounds really congested.
Ugh. I am just praying that a chylothorax isn't brewing.
Well, the doc just came in and they are turning up the settings on the CPAP. Not the direction in which we want to go.
She's miserable. And I am pretty convinced that one of the most depressing places ever is a children's hospital on the weekend. Minimal food is available, the halls are deserted and those of us that are here look sad.
Hopefully things will turn around soon and I'll have a better report tonight!
On a side note, Tom is thrilled that the Pittsburgh Penguins won the Stanley Cup last night. As for me, I am thrilled that the whole hockey playoffs (which started in 2007 I believe) is finally over. Geez! Every time I turned around there was a playoff game on that he HAD to go watch.
Oh, and after he watched the game he ended up getting to meet Jerome Bettis and Hines Ward from the Pittsburgh Steelers. All this while I sat here in the lap of luxury at Children's National Medical Center. Ahhh, life is good!
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4 comments:
I agree that weekends at the hospital are terrible. I wish things were going better for Harlie. I'm keeping up the prayers for her (and for you).
We are thinking about you and I am sure it is so much better with Tom there and that it is very hard on the weekends. We are sending our LOVE and SUPPORT!! Mike and Marcy
I agree the only thing more depressing than being there on a weekend is being there on a holiday. (sigh!) I am praying very hard for Harlie and her breathing. Does this mean more time in the CICU? Sending you restful thoughts Mama.
I always dislike the hospital. Even in the mid-week with the clowns and happy people handing out stuffed animals I always think of the kids that are having serious surgeries and those whose lives hand in the balance and kids that are very ill. It's just easier to who's who on the weekend. Hang in there. I hope things improve some tomorrow. I'm sure those low sats must be hard to see. Hugs to you and Harlie!
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