But immediately I saw a problem brewing for the day. Jordan was down the hall away from the nurses station just a little too far for my liking. Now that she was getting her "umph" back, someone needed to keep a close eye on her. She doesn't cry for help, and clearly she can't press the call button. While I was getting dressed for the day she managed to twist (arch) herself into a tricky position, and on top of that managed to get her nose canula poking into her mouth. She was as mad as a hornet, and couldn't alert anyone to her situation. So, I chased down a couple of nurses and showed them how she was in distress, even though she was saturating 100% because the canula was blowing 50% oxygen right down her throat.
I didn't have a good feeling about the day as I left, but what is a mom to do? I needed to pick up Avery from school and spend the day with her. She's been a trooper through all of this, but whether she says it or not, being the "healthy" kid is no picnic either. On Monday she was tantrum-y with me, but trying to make best friends with all the nurses. It makes sense, if they all dote over Jordan they can all dote over Avery as well, right!
So, Avery & I did our errands, including making more Jordan food, getting new books at the library, making fun ladybug craft projects with Child Life, and even sneaked in a trip to OMSI with Heather, Ariana, and Aidan to "play" with the dinosaurs. All the while we were checking in on Jordan, who seemed anxious for some attention herself (after sleeping for the previous 6 days straight). I had planned to spend the night at home with Avery, but mommy instinct prevented that, and instead nana Noma graciously agreed to another sleepover with Avery, while I headed back to the hospital.
I was in tears within minutes of arriving. I don't know what happened with the day-shift nurse, but the night-shift nurse was run ragged by the mother of our new roommate, and things had already fallen apart. First I requested a room change, so Jordan can be seen from the nurses station -- vital for a child that doesn't cry or vocalize discomfort or pain. Then it was time to get sorted out, cleaned up, and back on schedule: her diaper hadn't been changed in hours, her food was an hour late, her medicine was still (after 6 days) on the wrong schedule from the pharmacy (which is particularly important when dealing with seizure meds), her g-tube stoma had dried blood around it, there was a rash on her chest, she didn't have any clothes on, her IV site looked like it had been burnt, and there was blood dried around her nose, down her cheek, and onto the pillow. Yikes! It was too much.
I'm happy to report that once I pointed these things out they were rectified very quickly, including an all-important room change. I can only guess that the mother of the child we were sharing a nurse with was just as demanding, unreasonable, & repetitive with the day nurse as she was with the night nurse, and the nurse couldn't take care of Jordan because of that (although that's hardly a worthy excuse!).
Today the attending came to talk about my issues with Jordan's care yesterday, then Jordan's pediatrician, then the Patient Relations Services representative, too. I am happy with their response to the situation, but a little worried about leaving her here by herself for any amount of time. Which, for $4000/night, I shouldn't have to worry about, right!?!?!
So, to make our case a little stronger, I posted this sign on our door:
I’m the quietest baby in the world
So, please help keep an eye on me!
I don't cry when I need help, but I do arch & get twisted around.
Try calming me down by repositioning me, changing my diaper, or talking to me.
Sometimes you just have to take things into your own hands, even when your hands can't be around every minute of the day.
1 comment:
I can't believe that Leslie. I would have cried too. I can't believe that she was treated so poorly. I hope your sign is working and that the nurses have gotten the message. That just breaks my heart.
Shannon Innis
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