Hi all – Sally was discharged and came home late this afternoon, ending a long and emotional week for all of us at MSK. How did she celebrate? A bottle and off to bed in her crib. Today was a sleepy day (as you can see in the photos), probably an after effect of the hyper-ness of the steroids the day before. I took her for a walk around the floor before leaving, and was surprised at how everybody from cleaning people to the food people to the nurses all knew her by name. She’s quite the little celebrity on the 9th Floor. Lots of “Good-bye Sally, I’ll miss you, but I hope I don’t see you soon!”
Also before leaving, Nicole gave her a shot in the leg while I held her, we had to practice doing this on her own which will be a daily occurrence for now. We also have a schedule of drugs we have to give her throughout the day and make sure she’s staying hydrated. Her blood counts are all very low, so we have to keep her inside and watch her closely, as this is the period where fevers come into play. If that happens, we have to take her right back to the hospital and check her back in. From speaking with other parents, this happens often, so need to keep a bag packed…
Hmm….I hear Sally getting up….
Just got some major snuggle time with Sally after we gave her some meds, still very tired but smiley as always. Nicole works all day tomorrow, luckily my sister is here to lend a hand this weekend.
Well, gonna send this off and go get some sleep, hopefully a restful one knowing our whole family is under the same roof. Please keep Sweet Sally Sunshine in your thoughts and prayers. And wish us luck on being Sally’s nurses at home.