Comfortable

The last day and a half (Days 5-6) have been a lot more comfortable for Lily. Yesterday she was able to see her sisters for the first time in five days. She watched lots of movies, colored a little, and generally was pretty peaceful.

I, on the other hand, was extremely tired because I usually get up with her for the vest treatments during the night. But, do you think that little girl would take a nap for me, so I could rest awhile? Oh no! : ) Instead, she took a nap while Daddy sat with her for a couple of hours. (I went home with the girls to get some clean clothes. Elise and I read a chapter of Pollyanna while I got some Leah and Elise snuggles and had a little lunch.)

Lily did, however, sleep through her 1:30 am vest treatment, which was awesome because I had to be out of my sleep room by 6:30 this morning (it was a sugery consult room that I remember well from previous hospital visits). Sleeping until 5:30 this morning (the next vest tx) seemed nearly a luxury!

Lily moved back to the ICU step-down unit this afternoon. Discussions were had about moving her to a regular med-surg floor, but I was really uncomfortable with that idea, mostly because of the way this hospital stay has been sort of up and down for us already (quite literally, if you consider all the moving between floors, units, sleep rooms, and such). Lily still definitely has retractions, moments of diminished breath sounds, and times with an elevated respiratory rate, so we feel certain she’s where she needs to be at the moment.

Today has been mostly a good day. Her chest x-ray looked a little better this morning; although, it still isn’t quite back to where it was 2 days ago (when we transferred back down to the PICU. Her respiratory rate seemed to be perhaps a little higher than yesterday, but nothing too disconcerting. She has moments of perkiness, but they are relatively short-lived. Her energy level is still pretty low and she tires easily.

Daddy and the girls came by for a short visit today and brought a balloon with them. Watching Lily bat that balloon around and giggle when it hit Elise in the head brought smiles to our lips. Having the opportunity to see the sisters interact, even for just a few minutes, was heartwarming. Afterward, Lily was ready for a nap though.

I’m hoping Lily will be stable enough to eat a little something later. She’s been so hungry (one of her complaints) but was on a full liquid diet this morning. A full liquid diet when you’re a vegetarian is rather limiting in the hospital, so Lily had tomato soup and rice milk for breakfast. She didn’t seem to mind though! And, the tomato soup seemed to hit just the right spot.

So, we’re doing okay, but we still have a long way to go. Thank you all for thinking of us and praying! Thank you doesn’t seem enough to convey our gratitude to each of you for taking the time and energy to care for our family. Please know how appreciative we truly are!