I haven’t slept in two days, almost, except for a short nap last night.
Yesterday was a hospital visit for Kyrie, who is – of course – sick, just four days after our housewarming (chicken) party.
Sigh. This girl.
We busted her out, though, and had new oxygen tanks and a new concentrator when we got home. I don’t know how to get another travel concentrator since hers is worn out, but we are relieved to have a new concentrator and tanks at home, at least!
But she completely failed her feeding assessment. I mean, that’s unfair to say because her tongue is moving side to side more, so that’s progress. We take all the progress we can get! But she still can’t lift her tongue up at all (because it was sewn to her bottom lip her first year of life until they released it at palate repair). She can chew some things, like crackers, but most things she tastes and spits back out because she can’t get them swallowed. She aspirated pretty badly on her drink at the very end, and I just wanted to cry.
The good news is, if you can call it that, is that she has a little pneumonia from aspirating, and isn’t really sick from the chicken party. Maybe. Except that’s not good news at all.
Regardless, this along with only being 22 pounds at 26 months has finally resulted in what we have fought off for two years: the referral for a gtube has been made. At this point, it will just be more comfortable than doing the ng tube everyday, and maybe help her grow a little – though she is nice and long, growing inches and shoe sizes every time she is on oxygen for more than three days solid.
After that, I worked swing shift in the ER last night, and we were slammed.
I came home to a pile of paperwork at midnight, and stayed up until about 2am working on that. Nathan was so sweet to make me some tomato soup so I could finally eat a little since I had to keep working.
This morning, I had to get up at 545am to drive back to Tulsa for annual licensure supervision ethics training, which lasted until noon.
Then I had uber exciting meetings about group home progress, which is both terrifying and thrilling, and finished just in time to come back to work in the ER until now.
Besides all that, I may or may not have been in a room (unwittingly) with a gun at some point in the last forty-eight hours, and I am still a little shaky from the experience.
Mostly I am exhausted, and missed the children today, and am in shock that the group home idea is actually unfolding finally, and I am very extra excited for a day off tomorrow.
A day off, just in time to turn a 600 page white paper into a into a 35 page proposal into a PowerPoint presentation, all of which reminded me I still need to create another PowerPoint for speaking in Houston next week! And they added another speaking time for us! We are so grateful, truly. I know what I am going to say, but am hoping for more discussion than PowerPoint because I want to be helpful, not just nerdy.
These are my days, ups and downs, and running in circles.
I will work hard to do my part at working hard, but I will also enjoy every moment of rest I can get, like at home with my babies tomorrow – especially since it is my weekend to work Saturday and Sunday.
So I am worn out, but finished with work as much as I can be, and ready to go home to Nathan. I am not going to work more tonight, even though there is more to do. My Sabbath has begun.
Life is so hard sometimes, and I am grateful he is my companion, and grateful for his good care of me. I will miss him when he goes to Philadelphia for one of his musicals and we go to Houston to speak at the conference.
Tonight I get to go home, and stay, for a whole twenty-four hours.
Dream big, girl. Dream big.