I doubt that were the only family out there who occasionally forgets that we’re dealing with a very serious disease here. It’s not that CF really ever leaves our minds but we tend to get cruising along with life & all of our commitments & begin to sadly, take our health for granted.
This week we had a bit of a slap in the face type of reminder. A reminder that each day, & all that we fill it with, are not a given. Christa’s been fighting an increase in respiratory symptoms for a couple of weeks now. Just 3 weeks ago she was running a 5K & regularly participating on her cross country team – feeling like she was in the peak health of her life. Keeping that in mind, all it took was one cold virus to crumble this peak. We tried the usual rounds of oral antibiotics at home & stepped up her CPT regimen, even added a course of steroids- with no success. The frequent coughing spells were making her sick & sore & wearing her out. We knew that a hospital stay was likely necessary to get her back on her feet again.
So here we are on a lovely Saturday morning. Not sarcastically lovely, but a morning we’ve actually decided to enjoy. When I say decided, I mean that it was a conscious decision not to feel whiny this morning. This is our second morning here following admission at the Children’s hospital in Omaha. Christa’s feeling a little nauseated from the large doses of IV antibiotics, and my hip & shoulder are sore from the bench sofa that I sleep on while we’re in. It’s cloudy & rain is on the way, and we both would rather be at home. The lesson that I’m writing about this morning is one that I have to apply for the entirety of our stay. While there are plenty of negatives that can be found at this point, we’re simply choosing not to see them. We may talk about them & address them with our doctors & nurses, but after that we try to let them go & search for whatever good we can salvage, today there is much. In most all situations there are gifts & blessings to be found, some are immediate and some appear in time, timing that is not ours to understand today.
So this morning we decided to compile a quick top ten list of the things we actually love about a hospitalization. I fully understand that not all stays are the same, sometimes extreme illness symptoms & side effects make it nearly impossible to find enjoyable time at all. But this post was written for those of you who are possibly in for a tune up similar to us…
#1) 1:1 time together= great opportunities for planning, dreaming, sharing stories & thoughts that often get rushed through on a regular busy day at home.
#2) Time to binge watch & read! Never do we ever have time to simply sit & watch multiple episodes of something that makes us laugh, or read several chapters of our books in one sitting. Christa even likes to wear earbuds & catch an episode during her rounds of respiratory therapy each day.
#3) Accessibility to so many food & snack options. While this one is great for Christa- it’s tough for me. As she’s grown into a teen, my role is now a mixture of support & assistance here in the room as well as delivery driver for all her favorite dining spots. Our hometown has a handful of great places to find take out…Omaha has hundreds 🙂 So far she’s had some of her favorite Noodles & Company combination, a Crane Coffee run and a gouda & beer cheese soup from the Upstream Brewery that was heavenly. On her list for tomorrow is Panera.
#4) Time to experiment with hair. It’s so stressful to test out a hairdo & have it fail five minutes before we need to leave for school. We have fun finding things to try on Pinterest & You Tube. I’m not full of talent for hair, but I did master a fishtail braid we had to show off in the photo above!
#5) Extra sleep. This maybe should have been number one, because we definitely cannot underestimate the power of a nice catch up on pillow time. We both enjoyed a little nap on a rainy afternoon after the beer cheese soup today.
#6) Time to be creative- for fun. This stay we’ve decided were going to experiment with soap making a little. Come back tomorrow to see how that works out!
#7) Shopping. Yes, one perk to being in Omaha is that there are a number of great places to shop close by. In years past, I never left the room without Christa during a hospital stay, but as she’s growing up she stays independently a little bit at a time. I initially would drive just down the street to the grocery store & she’d watch for our vehicle out the window. Now she’s happy for me to go run a few errands. It gives her a little time alone & usually results in something fun or new for her! On today’s list was her winter coat.
#8) Family photo book catch up. My goal for myself during each stay is to knock out one year’s worth of photos & compile them into a digital scrapbook which I then send off to be printed. I’m working on year 2013 currently, so I’m not that far behind!
#9) Opportunities for growth in her communication & advocacy skills. as much as I’d like to be by her side at every appointment in her future, I know the day will come when we need to turn the reigns largely over to her. I’ll always be there for support, but our goal is to raise a strong, independent & capable daughter, CF needs included. I watch & see how interacting with the health care staff on a regular basis becomes easier for her as our stay goes on. I let her list all of her medications and address her issues with staff as they arise when ever possible.
#10) Learning something new. It’s rare that we have a stay that doesn’t result in picking up some piece of information that we didn’t have before. We’ve learned everything from autogenic drainage techniques, to high calorie recommendations that we’d never tried. This stay we’re testing apiece of equipment called a there-pep device.