Overnight (Wednesday -Thursday) : A night filled with some rest, times of turning from side to side, and complaints of pain in the tummy as well as the back. Finding a comfortable position was challenging, but throughout the night we managed to find positions that worked for a short while so Ella could sleep. Thursday, 12-14-17 : Today was moving day. Ella was transferred from the PICU to the Neurology Floor. With all of her machines and me following behind with her wheelchair, we made the trek from the 16th floor to the 19th. We were no more than in the room and hooked up when the Orthotics Team came to make a casting from her in order to make her specialized TLSO (body brace). The team slipped a cloth onto her like one might slip a cloth onto a rolling pin. The cloth encased Ella from the neck down right past her hips. Then they applied casting gauze; manipulating her body and pushing on the bed as they rolled it under her back. We waited a few minutes as the cast hardened and...

12-13-17 @ 1:00 pm: No position is comfortable. No words are reassuring. No relief has been reached. We traverse on the first 24 hours after surgery and pain management has taken a downward spiral.   Ella will remain in the PICU for another 24 hours. New meds and an increase in current med doses, change in rates, and tweaks of frequencies have been ordered by her pain management team. They are paying close attention to her hemoglobin as those numbers have dropped while at the same time monitoring her tachycardia (she has an increased heart rate alongside low blood pressure). With all the increases in meds and new ones introduced her respiration has slowed down a bit so we watch that as well. She has gotten very little sleep, has eaten nothing, and is allowed only small amounts of water.   This has been, without a doubt, a very trying time for us. It's difficult, to say the least, not to be able to provide comfort for her especially because she is asking ...