May, 3rd 2023
The day overall was uneventful. We had a our initial consultation with the inpatient Feeding therapy team. Richard had a couple visitors and found the playroom today!
The most interesting part of day was he went down to ultrasound to verify he does not have any blood clots around his central line. The team down there took lots of extra time with us and got a very nice lesson on what we were looking at from the attending who actually joined us.
A reacquiring challenge
One of the challenges we routinely have had in the past and we are starting to see signs of here, is that with Richard we have spent over 380 inpatient nights and countless outpatient troubleshooting days under our belt and have test many many different combinations of things.
One thing that we have learned the hard way during the years is that a lot of Richard’s cares, protocols and medications are not the norm and several of his medications are being used for non typical and/or off label solutions.
Our family goal is share the known history that normally is buried so deep in Richard’s chart it is nearly impossible for a provider to find. Then share our real-time observations of Richard, finally share our opinions and then to “shut-up” and let the people with medical degrees make the decisions.
There has been some minor challenges with engaging the daily provider team and some of Richard’s medication continuity. This a normal challenge for us with any admit and/or team that is not his core team everywhere we go.
The example today is his PPI (antacids) meds. Upon arrival, Erin and Nikki (General Surgery Nurse Practitioners who take care of Richards needs in real-time on the floor) did a great job of reviewing his meds, historical nursing care orders and other relevant history and ask all the right questions. With his two PPIs the issue always keeps coming up at the night shift change when a pharmacist and/or Fellow who is just doing a good job of trying to catch discrepancy in Orders DC his Omeprazole without tell/consulting either parents and/or his core team.
I would like to both compliment Pam and the NP last night (she said her name but my brain did not log it) on their handling of this. I also only bring this up now before we start the next phase of trial and error after today’s study.
More on this story tomorrow.
A special visit
The highlight of the day was a visit from Mama and Sidney! Richard was very happy to see mama and mama even cried. The boys spent time playing on the mat and lots of mom cuddle time.
An interesting side note, we rented a car for mama and this is her first time driving in a couple years. Boston Drivers and Pedestrians do not like to obey traffic rules and signals.
