My Ronald McDonald House bracelet is tattered and about to fall off. I have kept it on my wrist since the first unbelievable week of Phoebe’s ordeal in January. I’ve been reluctant to take it off, I don’t know why..maybe keeping it helps me believe that this is all still new and not really my life. Like this is something we’re just going through that will be over soon and life with Phoebe can resume as normal.
But I know better. The bracelet will fall off, the clothes in her closet will be too small for her to wear when she actually gets to wear clothes again, her hairbands and clippy bows will sit in the bathroom drawer for a long time to come, obsolete without hair to fix up. I hate that time is just moving on, that I brought her to the hospital January 1st terrified that she had Meningitis only to find out she had a brain tumor. I brought clothes for a two night hospital stay. Now I’m reminded daily that this is a marathon, not a sprint. I want the sprint.
This morning when I arrived at the hospital Phoebe looked dehydrated to me. Her eyes were sunken in, the skin on her face was flaky and she looked more sleepy than usual. Her heart rate had been high last night and continued on into the 180’s today. I suggested last night that I thought she needed more free water since her sodium was also on the high side. They disagreed.
Today they decided to give a little free water but I still thought it wasn’t enough. I mentioned dehydration again. So the day went, physical therapy came and Phoebe was fussy, a bit resistant and hard to wake up and engage, her sodium climbed a few more numbers, her heart rate continued at 180 even after Morphine. I kept putting all the facts next to each other and coming up with dehydration as the cause for her elevated heart rate. Before I traded shifts with Nathan I talked to our nurse and expressed my opinion one last time that she was dehydrated.
Nathan just called to tell me that her sodium had shot up to 162 and they decided to give her the maximum amount of free water because she’s dehydrated. Her heart rate is down now from 180 to 155. It’s frustrating to me that she had to spend last night and today struggling to engage, struggling with her physical therapy, struggling with her heart rate because of something so easily remedied. It’s hard to see what the problem is and not have the authority to fix it, especially when it comes to taking care of my own child. These are the little details of our days that wear me out. These are the things I think about while falling asleep and the concerns that bolt me upright in the morning texting Nathan at the hospital to see how she did through the night. Oh to be consumed with all these details is wearisome. How can this be a marathon? How can there still be so far to go?
I don’t want to be ungrateful for the opportunity to fight. Some families don’t even have that option. Some cancers are terminal without an option for a life-saving treatment. I am grateful for the chance to fight, and yet I am battle weary. The highs are much higher than I anticipated, and the lows are much lower than I expected. This is why I’m so thankful people are praying for us. I feel like the only thing I can pray these days is “help her Jesus”…”please Lord”. At a time when I would expect to pray a lot, all of my words fail me, and only pleas are left.
I am relieved that Phoebe’s heart rate was not an indicator of something more serious going on and that she will feel better as her body re-hydrates. Tomorrow morning she has an upper GI test and Barium enema to check her intestines and GI tract to make sure she doesn’t have any strictures or narrowing in the bowel that would cause her tummy to bloat up. Please pray for peace for her as she has the procedure. The tests will be lengthy and she needs grace.
Thank you everyone for loving our girl and praying for our family.