So Dr Raskin was overly optimistic about the pain levels. Last night, we got Annie settled into her room on the 19th floor just in time to order dinner, and she fell asleep for Derek shortly before something attached to her beeped, so she only had a half hour nap. After enthusiastically eating 3/4 of a kid cheese pizza and saying goodbye to Daddy, she fell back asleep for about half an hour, just as the night nurse came on shift and had to wake her up to have blood pressure taken. She cried a lot, was very upset about her hands being out of commission with IVs, but eventually fell back asleep after the 10 pm blood pressure check. The nurse had to follow protocol to check her every hour, but Annie and I both managed to fall back asleep quickly after the first couple. At 1:30 AM, she tried to sit up, made it far enough to slump over bent over, and then was in a lot of pain because she wasn’t supposed to be bending yet. We had to do quite a bit to calm her back down and tried shifting position and meds, and I think she might have fallen asleep after 3. Then she was up fussing at 5:45 again, and the nurse noticed that her main IV hand was getting puffy and secondary IV was not working. So we had to disconnect her, take out both IVs (she cried with every pull of the tape), and bring in the IV team to put a new line in on her left forearm. Her first two IVs were put in after the gas mask knocked her out in the OR, so doing this awake was pretty traumatic for her. I feel like I’ve spent the last 5.5 years working on overcoming her PTSD from medical visits–she used to cry so hard she vomited all over me when she had to have blood pressure taken or blood drawn back when we first got her–and I can tell we’ll really be regressing for a while.
As I was typing, part of the operating team came in to check on her this morning. She’s been complaining that her feet and legs feel weird, but after feeling her legs and feet, the doctor thinks that everything is just feeling overstimulated and sensitive after the surgery and put her back on a nerve medication that she was on in the OR. Hopefully it will soothe everything and allow her to settle. He did say that judging by her leg movements which he tested in the PACU, she definitely has reduced tone (which was the goal of the surgery!), and he is not concerned.
I frankly feel like a zombie. I am 5’8″ and the couch that folds into a bed is about 5’5″ long. We’re both going on essentially two naps overnight, but now that the day nurse has come on shift and checked everything, she seems calm, so maybe she will take a nap now with meds flowing smoothly again. Of course, it’s 8:30 am, and I’m not sure I will be able to nap. The doctor amended orders so that they only have to come check on her vitals every two-four hours rather than every hour, so at least that will give us both some downtime.
Hoping that today is calm from here on out! She ate part of a chocolate chip pancake and a piece of bacon for breakfast, and she wants to take a nap until lunch.