Yesterday afternoon, Annie was daring enough to transfer into her stroller for a walk around the 19th floor, then down to the 12th floor for the family fun room. We picked up a puzzle, and when it got too loud in the family room, we came back up to the 19th floor lounge. I lesson planned while Annie did her puzzles. We were both big fans of getting out of the room for a while, though she came back and crashed and even had an early night. The night was our best yet–she woke a bit when the nurse came in to get vitals at midnight, but we both fell back asleep quickly and slept until the floor-wide alarm went off at 5:45 for a Code Red Drill. Annie was not happy about that, and she had slept so hard that she had an accident in the night, so we got up, bathed her, and started our day nice and early.
So I found the laundry room! Two washer/dryer units for the whole hospital, but better than nothing! Annie is getting more comfortable with me leaving her for a few minutes, so I got to leave the room to put in the laundry, transfer it to the dryer, and then brought her down with me to pick up our dry clothes. Since I hadn’t set foot outside the hospital except a brief outing to pick up dinner last night, it was good to remember that life is continuing outside of room 1908.
We explored the 11th and 12 floors–not too much to see outside the playroom except a Chicago fire engine and dalmations that Annie couldn’t really play on because she’s not bearing weight yet. But we definitely enjoyed walking around a bit. We decided last night that instead of screaming and crying every time I move her, she’s just going to grunt hard. That worked some of the time getting her in and out of the stroller and on and off the toilet.
She’s now pooped and peed and is off all IV meds, so we’re mainly doing oral meds with the g-tube as a backup for some water rinses. She’s still not drinking as much as the nurses and I would like, especially with all the meds we need to process out of her body, but thankfully her pediatrician Dr Griffin and I had agreed to keep the g-tube port in until after the surgery, even though she’s eating everything orally now. It’s sure been the source of many of my most stressful moments of motherhood, but it’s a great back-up now!
Dr Raskin stopped by and said that she’s met all of his criteria for transferring over to Shirley Ryan! He’ll still be seeing us there, but we’re eager to get to a (hopefully) bigger room with a (hopefully) better parent sleeping arrangement and to get started on the PT and OT. His nurse administrator came by to say that everything has been submitted to insurance, and we’re just waiting on them to approve her transfer. Good news is our insurance company tends to be pretty prompt, so best case scenario, we transfer tomorrow, and if not, hopefully Wednesday. The hilarious thing is that the hospital policy is that any hospital-to-hospital transfer has to be done via ambulance. Here’s a map to show you how ridiculous this is in our case.
A is the Lurie tower we’re in. You can walk through second floor hallways across the street, past the shared Lurie/Prentice/Northwestern parking garage, and into the main Northwestern hospital (B) without going outside. I did this on Saturday, when it was raining, and it takes no time at all. Then you literally see Shirley Ryan (C) down the block. Okay, so the main entrance is around the other side, but you get the point. The gal who was telling me that we have to ride an ambulance to get there was shaking her head that she would gladly come pull my suitcase while I pushed the stroller, but alas, hospital policy is hospital policy. It will almost certainly take us longer to get to the ambulance, load up, drive, and unload than if we just walked over, but we will do what we must!
The Child Life folks found another puzzle for Annie to play with, and she’s been sitting up and doing puzzles more today. And after lunch, we wandered back down to the family center and found a piano!
