We recently learned that we are eligible for skilled nursing care for Verity through the ECHO program, with Medicaid picking up additional hours. I still need to figure out what paperwork to do for the latter, but ECHO has been on the ball, calling me several times in the past week or two. The bottom line is that we can get nursing care 8 hours a day for 5 days a week, to be used however we want! This is both exciting and rather unnerving--now that things are in motion, it is all happening so fast. ECHO recommended a particular local nursing agency, and they contacted us last week and did a home visit to meet Verity and ask even more questions, lol. We met a nurse a few days later--shocking, since the case manager had indicated that it can sometimes take up to 6 weeks to find someone. Not surprisingly, the candidate prefers daytime hours...we are hoping to find nighttime care at least 1-2 nights a week so that we can have reliable sleeping hours, but daytime help will be a blessing for sure.
After I interviewed the home nurse, I felt comfortable telling the nursing agency that we are ready to try and see how things go with her. She is an older lady with 26 years of nursing experience including extensive experience with feeding tube patients. She has 5 years of exclusive pediatric experience and has lived in our state for almost a year. My friend Joyce was visiting us and sat in on the interview, and she gave favorable input as well. The nurse will come Monday, October 16, for her first day...Ted has Oct 16-18 off work, so he will be here to assess how things start.
I suppose it's normal to have mixed feelings about this. In some ways, we feel Verity is "low maintenance for being so high maintenance," as we sometimes tell folks. She's not on oxygen; she doesn't have a trach. She's hardly been sick, though she has been fighting a sniffle the last week. (As far as we can tell, she only had a fever for a couple of HOURS! Hooray for Thieves and other essential oils!!) At the same time, she is definitely high maintenance compared to our other 8 babies...and I feel extremely stretched JUST caring for Verity (usually on very little sleep), let alone being a wife, mom and homeschool teacher to our other kids, feeding the troops, keeping the schedule, etc. Despite the "what in the world is this going to look like" questions, I've found myself noting times in the last few days when I think..."When the nurse is here, I'll be able to [insert activity here]."
When the nurse is here, I can give undivided attention to the child who is ready for a new math lesson.
When the nurse is here, I can read a story to my littles.
When the nurse is here, I can sit with my teens and discuss their literature.
When the nurse is here, I can pump without perching precariously in a position that keeps me in reach of both Verity and...whatever. (My breakfast, the coloring toddler, the child working on handwriting, my paperwork...)
When the nurse is here, I can TAKE A NAP AFTER LUNCH!
When the nurse is here, she can do more therapy activities with Verity, things I would like to do but simply cannot--not every day, not very long, or not at all.
These are the things I'm telling myself. I'm not feeling any guilt, really (trust me, I usually excel in that department); but I think my main struggle concerns me not having control. But if I'm honest, how much control do I really have on a daily basis anyway?! Our schedule is in chaos, and so much of our daily activity depends on what is happening with Verity at the moment. And there are all too many moments when I am simply exhausted, overwhelmed, and unable to think clearly.
So. I have decided to assume the best with this new scenario. I know it will take some time to adjust to having another person in the house--I imagine it will be difficult for me to hear Verity fussing or crying and yet continue doing whatever I am already doing with the other children. But hopefully--prayerfully--we will strike a healthy balance, and my other children can have a more rested, less stressed-out mama during the weekdays! Please pray with us about this transition!