AM: Sleep is minimal and words aren’t flowing well this morning so bear with me. Overnight we battled pain and high vitals for majority of the night. Turning off the ketamine did allow her to get longer stretches of rest so that was good. Her heart rate hasn’t been below 130s all night and gets up to 180s during painful times. They attribute this to an overall systemic inflammation response to removing the pancreas during an acute attack. Her sweet little feet are so puffy this morning. They are giving some lasix to take some fluid off. They will be taking out the nose tube today! Each day or two, something will be getting turned off or taken out and her monster pole and many many tubes will start to lessen! The “little man and his dog” are still sitting atop her iv pumps taunting her but I’m hearing about him less frequently than last evening!

Today’s goals: sit in “chair position” in the bed 2 times today and start using her incentive spirometer to keep her lungs working.

PM: So excited to share that today was an amazing day!! I think we have turned the corner. Emmy’s big day included: getting her nose tube out, brushing her teeth, sitting in chair mode in the bed for 1.5 hours (and requested to watch YouTube so she must be feeling better!), taking a long nap, then she got out of bed and into a real chair for almost 2 more hrs where we did her bath and washed her hair. Her a-line was removed and her hourly blood sugar checks are now via finger pokes which she really doesn’t seem to mind. They gave her albumin and lasix and they removed almost 3L so far which is great.

She is still requiring quite a bit of pain meds but they are keeping her comfortable in between doses unlike yesterday and last night which is great! For reference, from yesterday morning to this morning (24hr period) Emmy hit her “pain button” (PCA) 1,160 times. She can only get 1 dose (0.2mg) every 7 minutes so if she hits it within the lock out period, she does not receive a dose but it tells them she’s having pain. She received a total of 87 doses in that 24 hr period in addition to the other scheduled pains meds she’s also on. That’s a lot of medicine for such a little lady! The pain doc mentioned in his note that this is the highest number of attempts he’s ever seen  and one of the highest amounts of medication received he’s seen in a day. Not sure if that’s a good thing but all that to say her pain was clearly on a completely different level than the expected “normal”. BUT she is moving on from that nonsense and starting the hard work of getting up and around!!

It was SOOOOO wonderful to see and hear her personality start to return. She rolled her eyes at me and took a few jabs at dad and we couldn’t be happier! She’s still having some hallucinations and bad dreams but they are getting better. Tomorrow we are hoping to begin reducing some of the other medications that can cause this. Her heart rate has slowly come down throughout the day and is back down to a much more reasonable range (90-120s) this evening.