I'll quickly get to and past the hard part, because harping on my disappointment is not worth it. Long story short, we were moved from cardiac at 1am to the general peds floor. Thankfully it was a private room, but nonetheless it is more of a holding cell for kids like Gabriella. They needed the bed on cardiac, and I cannot blame the nurses, doctors, or any of our medical team. I'm disappointed in the hospital for opening a brand new, state of the art hospital set to cater to all the kids in the southwest at a level of excellence and they still have yet to open a cardiac step down for our kids who need more than general peds.
My lack of sleep last night over my aggrivation built confidence to tell the docs on the unit I wanted out today. She isn't on any advanced monitoring and only here to take meds orally & have blood drawn. Luckily my amazing transplant team agreed and is sending us home on home health and a PICC line. A nurse will come and draw levels daily so we can intricately adjust her med levels. We got her 12 outpatient meds delivered and sorted, my advanced schedule of 7 med times through the day and supplies to get us by at home. One last dressing change and we are waiting for transport to take us out!!!
We will proceed with caution for a while. Since she has a PICC line, just finished an aggressive immunity treatment over the last 2 weeks and her levels are lower than desired of immunosuppressant, we will be semi-hermit for a while. Well worth the trade off to be home and in our element.
I couldn't be more blessed to be sitting here watching her do so well again. Makes these last 15 days away from home, away from PJ & Paul and sleeping on a recliner with infrequent showers SO worth it. I'm so honored to have a fighter on my hands. I need to remember this when she is strong willed about other things... I'd rather have her stubborn than one who gives up!!!