On the way home from the hospital yesterday (for the second time), Lee looks over and says, “When are you going to blog again? You should have more than enough material now.” Yeah, I do. But I don’t want to sound like a miserable human, either, and right now, that’s exactly how I feel I am. Fortunately Callie is happy, pleasant, and smiley enough for both of us. Thank you for taking one for the team, kid!
Currently, I’m sitting in the hospital PICU. It’s only Day 2. When I went to the cafeteria to grab lunch when Callie was sleeping, nothing appealed. If you’ve ever been to Lehigh Valley Hospital’s cafeteria, you know there are plenty of options and all of the food is good. So when nothing appeals anymore, you know you’ve officially spent too much time in the hospital cafeteria. It’s time for a break already.
And hopefully, we’ll get a break soon. Callie had a g tube placed in her stomach so that her tube feeds can go there instead of having a feeding tube taped to her face and hanging down her throat into her intestines (you know, because she’s got reflux and pukes, so it needs to go to her intestines and not her stomach so she can’t throw up formula and aspirate). She also had a nissen done. The surgeon takes part of the stomach and wraps it around the esophagus to prevent her from throwing up and aspirating again. Hopefully this operation will solve our feeding and reflux issues. Hopefully.
When you’re a parent, lots of people feel like they need to give you new parents “advice.” I just want to go on the record saying unless you have a “chronic kid,” please offer all of your friendly parental advice to someone else, because it’s really not helpful to us in any way, and we judge you for it. Now you know.🙂
One such piece of advice was, “oh, she’s sleeping? You should sleep, too!” While that may be really great advice for the “normal” parent, we have a chronic kid. If she didn’t have a feeding tube taped to her face, that if pulled partly out she could aspirate, yeah, I bet we could nap when she naps. You know, knowing that if she pulled her trach out somehow while we were sleeping, the vent alarms would go off so we’d wake up to that. Best idea ever, right? Yeah, there’s a reason we’re fortunate enough to having nursing 18 hours a day, and it’s not because we can’t hack parenting. So, please, unless you’re a “parent of a chronic kid,” donate your sound parenting advice elsewhere, please.
Three times since I brought up the WordPress site in my browser so I could start typing, Callie has set off alarms. She “desatted,” which means her oxygen level dropped. And by dropped, I mean she was moving around and kicking too much that the sensor didn’t pick up correctly. Machines don’t know that, though. They say, welp, I’m picking up at 86 or 81, and you’re supposed to be above 90, so I’m going to ding really loud until someone silences me, or you stop moving and stay perfectly still so I can get a good and accurate signal. Ever try to tell a squirmy almost 9 month old to stay perfectly still? What’d they say to you in return? Get a clue?
So anyway, she’s over in her crib, laying almost flat, playing with her hands. She’s having a really hard time chewing on her hands, because she has splints on her arms where her IVs are and she can’t bend her arms to get her hands to her face. So far, as long as we continue down this same path, we’ll go home Friday. Friday can’t come soon enough. Friday, we’ll go home, and lay her flat, and watch her try to roll over. And it will be glorious.
I’ve also had the opportunity today to speak with the Medicaid company about their denial of our second ventilator. Because they still say no. So I have the opportunity to get our pulminologist involved now, because we’ve got to see him now, and he’ll help us out. I don’t know what prerequisites are for working in insurance, but it must include, “ability to be an absolute jerk to others in need, not return phone calls, and otherwise be a miserable human.” If you work in insurance and this does not apply to you, let’s talk.
And, I’m trying to work. I’m trying to go back part time. And by go back part time, I mean continue working part time from home, and hopefully start getting into the office more often. And I ask myself every. single. day. how in the heck I’m going to go back to work with all of Callie’s appointments, and insurance battles, and the farmers markets, and the farm stuff, and the house stuff, and everything else that just isn’t getting done. How?!
Guess that’s material for another blog at a future date.