12.23.21 Trach Floor 57

This week we have been blessed with gifts for all of our family by complete strangers. There is much that the kids are missing out on this year. Nothing beats being together, but I am so overwhelmingly grateful for the generous people showing our family such love and bringing light into these days. It is heartwarming to feel so much care from all around us. Thank you to each person who has loved on us. It really does help us to not feel alone. 

Aimee has had a rough time today. Yesterday we moved some medications around and she did not have a good night. Lots of agitation, muscle spasms, and dystonia. The pharmacist changed doses and is attempting to switch her to a longer acting version of diazapam, but it will take some time to switch her over. I am bummed cause she will probably not be at her best tomorrow when the kids and Ed come to visit. 

The only other change for today was adjusting her break off of TPN from 6 hours a day down to 4 hours a day. She was having pitting edema in her feet and urine issues with the increased volumes. Hoping this simplifies our routine for home.

Big picture, what do we need to do in order to get home? Well, here is the few items left on our to do list:

-finish trach vent training (should be done Monday)

-place a tunneled central line or a new PICC

-be trained on TPN administration 

-have first round of bone infusion done 

-get set up with a homecare company to provide TPN (none are currently taking patients)

The hospital would like us to wait for nursing coverage. They have written for insurance to provide 16 hours a day. Families are waiting months and even years for nurses right now. This does not align with our goals, so we will not be waiting here for nursing coverage. Unfortunately this means a very difficult home life, but better to be exhausted together at home then to be exhausted apart. Either way, we will keep her safe as we can.