December 27, 2023
1 Year +307
Todays theme….favorite spaces. Mine typically involve something visually peaceful, quiet or with some of my favorite chill praise artists. Reminds me who’s in control. As I have more sleepless nights and thus very early mornings I am soaking in the Christmas tree and making up for the lost month of December. Today the 4 am wake-up came from a beeping pump. I’m not so great at falling back to sleep.
We are soaking in all the things that are home and especially enjoying having a fuller house with Drew home and Tim taking a little more time at home. Our goal was to get away locally this week. But Tate is struggling. The level of anxiety and responsibility that hovers after each discharge continues to grow. Tpn (IV Nutrition) isn’t going great. Tate continues to lose weight despite the artificial calories AND eating some orally. Nausea and pain are increased, migraines and tremors are back and she overall just doesn’t look great But labs are mostly status quo for Tate. It’s a holiday week which means on call providers who don’t know Tate or me to realize if I actually call, I’m concerned. The response is a blanket suggestion that doesn’t fit our situation or her history. An ER visit doesn’t always cut it when you’re a complex kid and are dealing with chronic deterioration rather than acute. Inpatient is an exhausting exercise when you can’t access the team that knows all the Tate nuances. My chronic mamas get this. The at home burden is heavy. So we wait it out until the first or second week in January. Only two things can happen….Tate will get worse and we have to go in or God willing, she’ll get better. My prayers for direction are answered either way.