It's not the first time, and it won't likely be the last. Norah has a VAP, or ventilator associated pneumonia. Basically it's par for the course when you're living on a ventilator. Her viral panel was negative (which was surprising considering the sickness at home), but the culture from her trach came back as positive for lots of icky bacterial goobers.
We thought we'd be going back to South Davis today, Friday, but it may not happen. I don't want us to go back to SDCH too soon, only to have to be transported right back to the PICU. Last night she started really working to breathe. It was like she was sucking air through a tiny straw. Which I suppose technically isn't all that far from reality, if you look at her trach tube as a straw. But on top of that, she started throwing up. Often.
We had a rough evening yesterday when they had to replace her IV, change her g-tube button, and do trach cares, where we found that there was skin break-down on part of her neck. I won't even go into all the owies with the various labs they had to do on Wednesday. My poor sweet girl. Sometimes I just get this urge to tear everything off of her, scoop her into my arms, and pull a code pink (the hospital code for when a patient goes missing). But that's not how things are for us right now. She has to endure it. We all do. I know I have to be strong for her, but sometimes... when she looks at me with those pleading eyes while someone is hurting her... it breaks me. I cry with her. I can't help it. Sometimes the weight of our seemingly helpless situation is too much to bear. I am so grateful for all of these medical interventions that do help us... but I also hate them.
But she has moments where she is so lucid, and wants to play. But the rest of the time, she wants to sleep or have quiet cuddle time. I'm happy to oblige. And when I'm not there, a long line forms outside her room for Norah-time. I love it. So we're not over this hump yet, but hopefully we'll get there soon.
We thought we'd be going back to South Davis today, Friday, but it may not happen. I don't want us to go back to SDCH too soon, only to have to be transported right back to the PICU. Last night she started really working to breathe. It was like she was sucking air through a tiny straw. Which I suppose technically isn't all that far from reality, if you look at her trach tube as a straw. But on top of that, she started throwing up. Often.
We had a rough evening yesterday when they had to replace her IV, change her g-tube button, and do trach cares, where we found that there was skin break-down on part of her neck. I won't even go into all the owies with the various labs they had to do on Wednesday. My poor sweet girl. Sometimes I just get this urge to tear everything off of her, scoop her into my arms, and pull a code pink (the hospital code for when a patient goes missing). But that's not how things are for us right now. She has to endure it. We all do. I know I have to be strong for her, but sometimes... when she looks at me with those pleading eyes while someone is hurting her... it breaks me. I cry with her. I can't help it. Sometimes the weight of our seemingly helpless situation is too much to bear. I am so grateful for all of these medical interventions that do help us... but I also hate them.
But she has moments where she is so lucid, and wants to play. But the rest of the time, she wants to sleep or have quiet cuddle time. I'm happy to oblige. And when I'm not there, a long line forms outside her room for Norah-time. I love it. So we're not over this hump yet, but hopefully we'll get there soon.
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| Trying on mama's glasses |
Oh, I am so sorry. This makes me cry. Hang in there, both of you. I'm so glad you've got everyone around to help you out. But why can't the PICU just be a party place we can visit on our own schedule for an hour or two, and then LEAVE??
ReplyDeleteHugs to you and your baby girl. Your post made my heart ache.
ReplyDeleteJust been catching up with your last two posts when I had a good time to read them. So sorry to hear Norah has had a little stumble when she was doing so good. But she's proven again and again she is a little fighter and you'll get through this. Hugs xxx
ReplyDeleteI'm sorry. I know that breakdown too well when your baby looks at you like "why aren't you saving me from this???". It's torture. I hope you're out of there soon. Hugs, Mama.
ReplyDeleteThank you all so much. We're finally on the mend!
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