One Step at a Time

So we made the big move from the PICU last night around 10pm downstairs to a regular room. In preparation for the move, they had to transfer Lilly to a different bed which was an adventure. Her new bed had an extender on it--making it suitable for someone as tall as Jared--so she looked extremely tiny in it. The extender had to go, however, when our nurses realized, on our way downstairs, that she would not fit into the elevator. It was comical to say the least as a nurse, an aide, and several housekeeping staff (along with Tom) tried to figure out how to shorten the bed. It wad a first for our nurse--so happy we got to be a part of CHOP history!

Our arrival on the floor was greeted with an unenthusiastic nurse who gave me a tour of the floor and warned me that things here would be different than upstairs--the nursing ratio is much lower and they respond to calls as they are able. So I was ready to be an ugly mama bear if I had to for my Lilly's sake.

Thankfully, that nurse went off duty shortly after our arrival and our night nurse, Kevin, was fabulous.  No mama bear necessary. Last night we got a little more sleep than our night in the PICU. Fewer alarms and interventions--coupled with a much quieter roommate who sounds just like Lilly when she whimpers and talks--made for fewer external sleep interruptions. Lilly, however, did awaken periodically needing new meds or setting off her own alarms by pulling on the various tubes on her body and dislodging her EKG leads and/or her O2 when scratching her itchies that have resulted from the morphine.. Her overnight nurse was great and really responsive. And her bed is now big enough that I was able to crawl up next to her a few times when she needed me closer than the 3 ft separation between my cot and her bed.

They will begin to wean her from the  morphine today and are switching her over to tylenol and oxycodone, which she can take orally.  She woke up acting more like herself, watched some tv, and even ate a few bites of breakfast.  A few moments ago, she asked to sit in my lap.  We decided to start by seeing if she could simply sit upright in bed.  It was painful, but she tolerated it for a few moments before wanting to lie back and falling soundly asleep.  

Baby steps in the right direction.  We'll take them, big or small.