Addyson had three appointments today so it was very busy.
We had dermatology—got her a cream for her back.
Then we had cardiology. Took way longer than expected. We discussed a med to help her retain fluids but honestly the side effects and drug interactions with her other meds made this a tough conversation. Her cardiologist suggested we go back to the NG because then we can hydrate better as needed since the infusions aren’t getting her through to the next infusion date. Her cardiologist is calling gi to discuss. The did another bedside tilt test they say her hr go up 30 beats in 3 mins. Only had to go up 30 in 10mins to meet the diagnosis so they agreed that even with the infusions she’s still having symptoms. Feel like we are moving backwards not forwards. The nurse in cardiology gave Addyson a stuffy. He said she is on a lot of meds and has a lot going on and she’s always a ray of sunshine so he wanted her to know he sees her and to keep shining bright. So nice when others see the good. So often she gets knocked down but he’s right she keeps pushing forward
We were then late to neurology. This became a cluster because the ambulatory eeg machine we scheduled months ago never got brought to the hospital. Her neurologist was very apologetic and said he will call Monday with a plan and it won’t be weeks wait because we have already waited weeks for this appointment. We shall see. Fingers crossed he works something out.
Then we rushed to her last cheer practice of the season.
And for some reason this week her bags don’t wanna stick!!!