A Really Rough Day- September 20, 2010

Although it didn't have any of the ups and downs or drama of the last week, today has been one of the roughest days so far.  Lolly has been miserable all day. 

My mom stayed here with Lolly last night, and I don't think either of them got much sleep at all.  Mom and I traded off around 9 this morning- she took care of Sammi at the apartment, and I came to the hospital to be with Lolly.  She was asleep when I got here, and snoozed for a few hours.  But once she woke up, she did not feel good at all. 

She is severely sleep deprived, anxious, scared, thirsty, bored, worried, and she seems to feel just awful.  She can't get comfortable and hardly sleeps at all.  She has pretty much just moaned about 90% of the day.  It is completely heartbreaking to watch her.  She doesn't want to be read to, and most of the time, she doesn't even want to be carried.  She tosses and turns all over her hospital bed, and seems to prefer to have her legs dangling off (perhaps she's forming an escape plan- unfortunately, she wouldn't get very far- she doesn't have any energy to even stand).

Yesterday, our nurse found us a baby swing for Sammi, and Lolly asked to sit in it today.  She dozed off for about 10 minutes before she wanted out and started moaning again.

Later on, she did snooze for a minutes as she cuddled in bed with me.  We were worried about her breathing, and respiratory therapy came in to check her and she woke up.  Since she was extubated on Saturday, her throat is sore, and she doesn't want to cough and get any junk out of her throat.  She hasn't sounded good all day, but did seem to do better after a Racemic Epinephrine breathing treatment (which she HATED). 

She was also coughing so much that she threw up.  :(

Her voice has still not returned completely after being intubated- she's still got a very weak, breathy, hoarse voice and cry.  It's so sad.

O2 sat monitor:

Poor baby girl is terribly bruised all over

Our nurse today was so sweet and carried Lolly while the check changed her sheets (after she threw up):

And a few pictures from last night, Sunday, September 19, 2010:

I got her that green "Choose the Right" bracelet yesterday at church- it goes all the way up on her skinny little arm:

I need to remind her to look at the bracelet a little more often throughout the day (like when she's refusing let the doctors check her, or when she's refusing to drink her formula, or when she's trying to pull her NG tube out).



Now it's 2 a.m., Tuesday morning- I'm finally heading to bed. 

After watching Lolly toss and turn and moan the entire day, she finally drifted off about 8 p.m. tonight.  I drove back to the apartment, nursed Sammi, finally ate dinner, and packed a bag for overnight at the hospital.  When I got back to the hospital after 9:30 p.m., Lolly had just woken up and had pulled out her NG tube (her feeding tube- which is a life saver since she refuses to drink her formula).  The nurses put a new feeding tube in, and a short time later, she'd pulled it out again.  They had to put a THIRD one in, and they had to put "No-No's" on her arms (so she can't bend her elbows to reach it again).  It made me so sad- thumb sucking is her one comfort, and now she can't do that.  :(

So for the past four hours I've been here, poor Lolly has had two new NG tubes placed, and was so miserable that I finally requested some morphine.  The first dose of morphine helped her sleep for about 20 minutes before she was up and thrashing about again.  Her second dose of morphine and Ativan has finally helped her sleep.

It's been one of the hardest days of Lolly's whole life- she hasn't smiled or laughed once today.  I just want to cry and cry when I think of all the terrible things she'd had to endure today.  She just looks at me, with the saddest eyes, wondering why she has do go through so much.  It really and truly is breaking my heart.  I am so, so sad tonight.  And the fact that she will be here for a few more weeks (at least) is making me even more sad.  

Sad day today.  Tomorrow has to be better, right? 

P.S. Tomorrow, I'll tell you about our nurse send straight from heaven (she's been the biggest blessing today!!!).