A better day! Thursday, September 23, 2010

(July 24, 2010, the day after she turned 2)

Poor mom and Lolly had a really bad night.  Lolly was in a lot of pain from her pancreatitis, and during the night, she was maxed out on all the oral pain meds she could get, but she still was in pain and could not sleep.  The nurse called me sometime during the night to get permission to put an IV in so that they could administer IV pain meds.  Several days ago, Lolly accidentally pulled the IV out of her foot.  (I wouldn't put it past her to pull an IV on purpose, but this time, the port got stuck between the toes on her other foot, and it got pulled out).  I told them to please do anything to make her feel better. 

They put the IV in and gave her some Fentanyl, but it only worked for a very short time.  My mom called me just before 8 and told me that Lolly really needed me.  I hurried up to the hospital sent my mom "home" with Sammi.  I picked Lolly up, and for the first time, she wanted to be carried.  Usually, she just hurts too much.  She sat on my lap and whined.  I decided to try to distract her, and got out some bubbles.  She got really mad, and yelled the whole time I was blowing bubbles.  It took me a few minutes to realize that she was mad because SHE wanted to do it- she didn't want to watch me do it.  So I let her have the bubble wand.  She got angry when it dropped into the jar and I had to help her out.  So we did bubbles for a few minutes.  Then I got out the play dough.  She yelled at me for a few minutes while I played with the play dough, then she wanted some, and played for a few minutes- still letting me know she wasn't happy.  Then we tried coloring.  I colored; she yelled.  Then she wanted a turn.

The QUEEN BEE has returned!!!

The DIVA is back in town!

Holy cow...this is going to be a long hospital stay here with her!  She has no desire to be pleasant.  And after our worries last week about whether or not she'd ever wake up, it's great to see her true personality coming back.  We had to walk on eggshells around her back when she was healthy- not it's about a million times easier to set her off.  She is quite the girl!!!

We went down for her NJ tube placement around 11 a.m.  A friend from high school was the radiology tech.  Poor Lolly had to be strapped to a board, with her hands tied above her head, so they could advance her NG tube further.  It was sad, but, thankfully, didn't last long.  She was angry enough during the procedure that she wet her diaper (her FOURTH time peeing- and a whopping 219 ccs this time!!!).

Once we got back to our room, our nurse had a great surprise- Lolly is off precautions!  When a child here has any type of infectious disease, they are put "on precautions."  That means that all medical personnel have to wear a gown and gloves when they come in to a patients room, and the patient is not allowed out of the room, for fear that they might spread any disease.  A reasonable practice, but enough to make any kid on precautions go crazy.  Lolly doesn't trust ANYONE wearing the yellow gown and gloves, and she had been able to leave the room once in a week and a half.  Now that she is off precautions (because she's had three stool samples in a row come back as negative for E. coli), she is allowed to go all over the hospital.

I was jumping for joy when I took her to the playroom this afternoon.  I thought she'd be so excited!  She didn't care AT ALL, and wanted nothing to do with it.  We went outside.  She was mad.  I tried to show her cool things out the window and below the balcony.  She was mad.  Finally I just pulled her back and forth, along the entire floor, about a million times.  She didn't look happy.  In fact, she looked quite angry (especially when we ran into several of her doctors and stopped to talk).  I know she liked our walk  because whenever I stopped, then she got really mad.

Lolly had a date with her dialysis nurse, Devin, at 2 p.m.    She was not excited (no offense, Devin), and didn't want to get out of the wagon.  Her catheter in her neck only works when she's in a certain position (lying calmly in her bed), so she had to go to bed.

Lolly is finally resting right now.  She's in the middle of her dialysis treatment; I haven't heard if she'll be getting a blood transfusion today (it's been several days- yippee!!!). 

We feel very blessed and thankful for all the support and especially for Lolly's improving health.  And since my mood is 100% dependant on her mood, today is a good day.