7.18.22 Help Needed

Hey. We're still here. Managing. Aimee is here. Managing. It isn’t much different than being inpatient. It is round the clock attempting to regulate temperature, fluids volumes in and out, respiratory care, trach infections, infusions of medication and of IV nutrition, pain levels. Except, we’re together… and we have less support. 

Last week one of Aimee’s providers asked me if this is sustainable. She offered us the option of bringing Aimee back inpatient for respite. What we are doing is not normal. By the books, Aimee “should” be in the hospital for multiple reasons. We are off policy rule breakers. It isn’t truly sustainable. 

Yet, we both feel it is right to fight for Aimee and for our family to be together. It is worth doing so that she is comfortable and as happy as she can be. It is good for our kids to see us sacrifice and fight for someone who cannot fight for herself. 

However, we need help, night help especially. This Fall when school begins again, we will need day help too. Even just someone to sit with Aimee and respond to low level cares so that we can focus on the other kids or get sleep. We are not looking for anyone to manage her care, just someone to keep her safe while we are on site, but in another part of the house/property. We want to do all of the high level care ourselves so that it remains consistently safe, but someone to reconnect Aimee’s vent when she pulls it off, to adjust her position and blankets, to suction her, to talk with her/hold her hand, empty her ostomy, flush her replogyl, do airway clearance, change pump batteries, ect. All tasks that we can train someone to do. 

Unfortunately, there is a caregiver crisis, particularly in our county. There are no available nurses or caregivers of any sort. We have only had one interview in nearly a year! We currently have one day a week covered and 2 nights every 1-2 weeks. Do you know of anyone who is trustworthy and caring looking for a job? We have 40 hours per week available through DSHS for a caregiver. We also have 40+ hours of skilled nursing hours available. Day or night options.

Aimee is a lovely, sweet 13 year old patient. She likes to listen to music and audiobooks. She loves to hold hands, snuggle her siblings, play with textured objects. She smiles and gives side eyes. She is fully dependent on round the clock care. Most days she sleeps the bulk of the time and she is on concurrent/hospice care. On paper she can be intimidating and she is very medically complex, but it is a peaceful, low drama job. Her space and supplies are very organized. Her room full of natural, indirect light. Siblings are schooled at home, well-behaved, and loving. Mom stays home.