4 days, 4 hours, 47 minutes and some odd seconds till Christmas, the ornament on the Christmas tree is telling me. And Wyatt is still home! It's surprised us all, I do believe. He's had a few close calls that led me to believe we'd surely be packing our bags soon, but he somehow avoided any recent slumber parties on 3F. This holiday season has been full of visits from friends and family, a house FULL of caroling teachers, Santa Claus visits and so many cards/surprises in the mail. It's also been full of medical care and emails/phone calls from this Mother to the docs, asking for advice and direction of what to do next for our boy.
Wyatt continues to have the "dreams" that I recently posted of. We started him on an IV medication, Haldol, which was successful in helping him rest for several consecutive hours at a time. But a few short days after starting it he began experiencing extreme reactions to the drug, a painful intense full body Dystonic reaction along with movements resembling Tardive Dyskensia. Side effects that indicated we need to stop the Haldol immediately. Which has left him, once again, startling awake in a panic several times an hour every time he sleeps. The docs are now back to the drawing board and trying their best to come up with a new plan. All the while we try to make-do as parents, reassuring and encouraging him to talk with us.
Last week we did visit with Dr. R briefly and had a few cultures drawn and taken to the lab (as my last post indicated). I didn't receive a call as quickly as I was expecting, but did eventually get it. Wyatt is/was growing Pseudomonas in his bladder (again) and a possible gram positive from his line, though there was suspicion the positive culture from the line could be a contaminate. We spent the afternoon in Day Med starting antibiotics and redrawing cultures. But was given the opportunity to "escape" back to our home for the remainder of the course of antibiotics. As the Palliative care team has been greatly changing the dose of his pain medication his pain is increasing. We have yet to find adequate pain control, but that's certainly not for a lack of trying. His belly is stretched tightly and distended. His body is retaining fluids. He's now resorted to creating his own extended version of the traditional pain scale; 10 out of 10 being worst pain, "more than 10" meaning even worse than that and "1,000" being the worst for our boy. Last night he was "1,000," which kept us awake for much of the night. And if it wasn't the pain, it was the nightmares.
For obvious reasons this holiday season is very special for our family. I feel blessed beyond words and incredibly grateful for the time we have together. As I care for Wyatt each day, listening to his complaints and seeing how his body is reacting to its own changes, it's amazing to witness- while his pain is increasing, sleep is terrifying and his body failing him, his spirit still shines through. His smile inspires, his laugh is contagious...I can't get enough! I wish for more...