January 11th, 2010

8:30am

I dropped Tracy off and went to find a parking space. By the time I got up to Lily's room, Tracy and Jill (Lily's day nurse) were standing over her bed. Lily was screaming her head off. She is just so hungry. Jill said that Lily had a good night. No episodes. No crying. She was given some Fentonol at about 7:30am, and it seemed to relax her for a little bit, but who knows? Maybe she is getting immune to it...sick of it....Whichever, only an hour later, she was completely uncomfortable. Actually, hunger is what it is. I'm sure her tubes are uncomfortable, but the way she roots at the pacifier and spits it out, it is obvious her mind is only on filling her belly.

For the next hour or so, Lily cried in waves. She would come down for a few minutes, put her nosey face on and look arounf the room...watch the nurses, watch her mom, watch me. But then she would realize she was hungry, and start crying again.

9:30am

The doctors were doing their rounds and were all feeling sorry for Lily as she screamed at them. They didn't like that the fentonol didn't work the last time around. So the dr. suggested giving her a low dose of Verced, which is a narcotic/relaxant. It should calm her down during her crying spells and help her to rest a bit more comfortably.

10:00am

Ahhhhhhh . . . Lily loved the Verced. Within three minutes, she was floating on a cloud. She slept comfortably four hours. zzzzzzzzzzzzzzzzz

Mid-Afternoon

Lily woke up wide-eyed and bushy tailed. I waited a few minutes and when I saw it seemed like she was up and alert, I turned her light on and started to take pictures. One of the nurses (not Jill) yelled at me and told me to leave her alone.

I ignored her. I might have even given her a dirty look!!

Late Afternoon

Lily's good mood lasted about an hour. The heart-breaking inconsolable cry was back. Rooting on her pacifier was back. We soothed her and rubbed her as much as we could, but in some moments it seemed to make it worse. We would stand back and she would stop crying, but then a minute later she would start again. In many ways, we were crying along with her.

At about 5:00, Jill had to change Lily's IV port. If you don't know, IVs have to be changed frequently because the veins can't handle the needle for too long a period. In babies, this is even worse. I hung out for a minute to stay and comfort her, but the nurses kicked me out. I found out (by watching) that Lily's veins are a tough catch. It took 3 nurses to try to get her IV in. They tried her left foot, but to no avail. I saw them using a bright light to shine on her skin to look for viable veins. Finally, after about 30 minutes, they called us back in. Her new IV was in her left hand with a stiff board to keep her arm straight. It actually works out well because this is the side her Replogle is on. It will be much tougher for her to pull it out with the IV on this side.

About an hour later, after another round of crying, Lily got another dose of Versed. It was bittersweet. It was nice to see that she was no longer in any pain or discomfort. But drugging your child is not the way any one would like to see them calmed down (I know I know...I'm sure there's some Benadryl parents out there...that's ok...I won't tell anyone!). We just keep telling ourselves that this is helping her recovery. She needs to rest. There is a big hurdle coming up on Wednesday that will either push her recovery ahead, or set it back. Rest is what she needs. We have to keep telling ourselves this, otherwise the guilt will tear us apart.

7:30pm

Lily's night nurse (Tanya) came in. Lily was still sleeping. We called it a night. Great news for the end of the day ---- Lily did NOT have ANY EPISODES today!! Her oxygen levels were great all day!! Yay, Lily --- You Go Girl!!!