We’ve had 12 hours of rain, which equates to a good night sleep… which equates to a new & improved attitude this morning! Those of you who read often know I use this journal as an outlet to express my private & raw emotions. I write mostly for myself & when I look back it isn’t entries about her blood pressure or temp, but rather entries about my reaction to them that recount this journey for me. The medical information serves as great historical reference, but the emotions tell the real journey.
Emerson’s white count is up again this morning & she didn’t sleep last night. Otherwise, she’s tolerating daily increases in her feeds and is back on track to being able to get out of here in the next few days. We’re still keeping an eye on her UTI & the increase in white count is a little concerning, but for now we continue to watch and wait. As long as she remains fever free we’re not going to treat.
I talked to several people here yesterday & the general consensus is that Eme can do this. Indeed I believe she can… goodness knows if anyone can come out on the short side of the statistics it’s Emerson! The key now, though, is to give her body a break. She needs to rebuild her strength. The next infection could be a very dangerous one, so we need to keep it at bay for as long as possible. We do that primarily by keeping the central lines OUT & by cathing her 4+ times a day. We do that by moving back to Colorado where we can get respite care & home nursing support.
Everyone seems to be on board with the “plan” & all are working towards the ultimate goal of getting her home asap! The current stipulation is that she needs endocrine & urology appointments scheduled at Denver Children’s. Once that happens the team here will start the process of ‘transferring’ care (or whatever exactly they need to do to make this move possible).
I’m playing phone tag with our pediatric endocrinologist back home & am working on getting a referral to a urologist. It won’t happen overnight, but we should be able to move home next month as planned.
On a final note, I want to pay tribute to the unsung hero through all this – my husband Jim. I rarely talk about the strain this journey has put on him. I don’t know how we could have kept it together without him. He truly is the glue that has held our family together. He, too, is overwhelmed and burned out. It’s been a long, hard road, traveled with commitment, sacrifice, & forgiveness – we’ve had our fair share of all three. Thank you Jim for everything you’ve done for me and for our family… we are all so fortunate to have you in our lives!
I continue to hold tight to the dream that we will all be together in Colorado. I continue to look forward to the “normal”, “ordinary” days of life. I continue to believe that Emerson can do this – without that belief it’s hard to make sense of this journey. Actually, it’s nearly impossible to make sense of this journey regardless, but if we’re able to bring Emerson home & give her some quality of life it will have, at very least, been worth the sacrifice.
A million thanks to all of you. Your words of support and encouragement fuel me through the difficult days...