1.26.22 Trach floor 91

My head is spinning. Lots of planning and details today. So many I couldn’t possibly communicate them all clearly. I had a hard time filling Ed in throughout the day and keeping my brain straight. The bottom line is that there are many preparations in the works and many people pulling for Aimee to be home soon. The medically complex care plan is being finalized and orders are officially being placed for all the different machines and supplies. The letter has gone to our local emergency response to give them Aimee’s trach safe data and airway protocol. We have a letter to send to our power company from the hospital about the life sustaining, medically necessary equipment being used in our home for a child. I’ve gone over nursing orders and tweaked them. I’ve edited the emergency plans. We have worked with several different people today getting splints, molds, and braces up to date. 

Aimee is in preparation mode too, but simply for tomorrow’s procedure. She has had a bath and wipe down. The team has a plan in place for her meds and her nutrition. However, we have not gotten the approval of the anesthesiologist who will be on for tomorrow. They can decline to do the procedure even after she is down in the IR for it. Until that point, we just have to plan that they will be reasonable and continue forward. Once Aimee comes safely back with a tunneled central line, we can have more confidence. And breathe a very much collective sigh. 

While Aimee is hopefully having her procedure here tomorrow, Ed will be home meeting with the homecare company for what they call “the big teach”. Simply they will be delivering the home vent and associated supplies, making sure that we have a safe location, and going over all of the protocol with Ed at home. 

I spent some time in phone communication with the state developmental disabilities today. They are rather behind the times and are just now suspending her services from now until we are discharged. 🙄 

Aimee and I will hopefully be starting up her midnight meds soon, which will be ending around 2am and the be starting her morning meds pre-procedure a few hours later at 5:30. The plan is for a 9:30 start time, but we will see what the day actually brings.