Our day turned sour pretty darn fast! It is 12:58am and I think that we finally have some control over her pain issues. I will be brief as I am too tired to write too much. Lucy had her GJ tube placed under fluoroscopy in IR at around 3:00pm. At 3:45 we were back up to her room, she was MISERABLE, and she made sure EVERYBODY knew it! I think that we have “stirred the pot one too many times”, Lucy’s body in particular her belly is done being messed with! Ativan was order for her at 4:33 pm(um, yes I was watching the clock waiting anxiously for something from pharmacy to come up to calm my baby) after a debate about what to give her for pain control. Lucy was finally allowed to get some much needed sleep at around 5:00 pm.
Drew brought the kids over for dinner again, and it was nice to be able to eat dinner with them knowing that Lucy was sound asleep. We let the kids peek in at Lucy for a second, but did NOT want them to wake her. They were quiet, blew her kisses, and whispered good night. I waked everyone downstairs and kissed them and said good night and that is when the tears started flowing, both Megan and Jack were sad to go and were upset that they could not play with Lucy. Last night it was Sophie who had a difficult time parting ways. Oh my heart broke for them, these are the moments that make “this” so real.
I was called the moment the kids left and was told that Lucy was awake, was pretty miserable, and had also pooped! I think she woke up because she pooped, and not because she was well rested. She was pretty darn cranky and unable to be soothed, and after screaming for over an hour we were told that we could move to an isolation room where she might be more comfortable…and frankly so would everybody else.
We are still awake at 1:27am because I think her bowels are FINALLY starting to move! They ordered her another dose of Ativan at 10:00 pm and she looks out of it but is wide awake with hiccups and belly pain. Ugh… not fun, not fun at all! She is also very swollen from all of the extra fluids, we had to retape her IV tonight because of all of the swelling.
Here’s hoping that tomorrow’s a better day!