Cincinnati 2012 - Day 4 Discharge

Sleeping with your child at the hospital is never a good night's sleep. But at least we were inpatient and I got to try Cincinnati Hospital's infamous "Dirt Cake".

 Way overrated I'd say.

I thought my friend Christy would enjoy hearing that I got the silent treatment all night. Ainsley who is the happiest girl in the world, didn't smile. She pulled me close like she didn't want me to be more than a foot away, but if I got too close then she pushed me away. She wouldn't answer my questions or anything. She was mad at me, clearly. 

We had a funny moment when I asked her if she was mad at me for touching her nose earlier. She wasn't in a playful mood so it made her mad which was kind of cute so I might have done it more than once. So I guess I'd pushed it too far, so then I told her she could touch my nose, and she squeezed it. Then I asked if she felt better and she said yes. Then she did it again a few times and almost smiled. It was hilarious and I laughed out loud. I could tell it made her feel better to get me back. If the nurses heard I'm sure they thought I was crazy.

All night long she kept pointing at her nose. She wasn't her usual self and I was disappointed that the test wouldn't be a typical day for their sample data for the impedance probe that tests for reflux. She also coughed a TON and needed an incredible amount of suctioning. It was tiresome. We stayed a little longer in the morning to try to get a full sized feeding done and then we were done.

  

Removing the probe.

Though that's what she wanted it does sting to have that tegaderm removed, and it does cause irritation to her face. It left a red mark that hasn't gone away.

That wasn't enough. She was happier but then she wanted the ID band removed.

As soon as she knew she was going home she was happy. And smiley. And her usual self.

Demanding.

She thought these gumballs were balls and insisted on having one.

I was afraid the misery was in part due to the new trach size but it wasn't. Pulling the nasal tube helped with the drooling, the secretions and the suctioning. I had to get orders in case we keep it in, because of our in home nursing. She actually made a lot of vocalizations today with her valve on and I have to wonder if perhaps she needed more airflow from the trach in order to have a strong "voice." I think we'll know better after a few days. Dr. Cotton said he'd leave it up to us to decide.

We waited under the animals before we caught our last shuttle van to the hotel. Ainsley desperately needed a bath. Then we headed to the Cincinnati Zoo for a couple hours before they closed. The hospital gave us free tickets which was really nice. Afterward we had dinner with my friend Claudia from the trach forum and her children. Ainsley and I skyped with the kids and then she crashed and I stayed up to pack. I'll post pictures of the latter half of our day tomorrow.

We get up at 5am to head back home. I am looking forward to getting back to my family and having a chance to process all this information. Right now I need to get to sleep but Ainsley's monitor is alarming constantly. A larger trach should help her night sats, not make them worse. I wouldn't be surprised if this isn't just another way in which she surprises us.

Thanks for the loving comments. It means a lot to me.