Day 48

Wow. Time seems to be flying by once we hit outpatient. We barely have enough time to get things done. Of course, we have had Sara here since Saturday. She leaves tomorrow morning. We have enjoyed her company and her distractions. We have started learning some local ways to get around downtown like the Perimeter Shuttle and Bethesda Circulator. We rode the shuttle to dinner at the Inn on Monday. It went well. I rode the Circulator to Giant Tuesday to get groceries to make a meal Karly had been wanting, so decided to just cook like I cook at home for a crowd and invite the other house guests. Just about everybody joined us which was fun. Karly, Zach, and Sara rode the Circulator getting off at several spots to enjoy a lunch, bookstore, and Gelato. Because Karly's Creatinine(CR) has been getting higher and higher, we were asked to come in today instead of tomorrow for labs which revealed her CR over 2 now. They had us stay to give her 1 liter of fluids to see if this will make her kidneys happier. Another issue she is currently dealing with is Skin GVHD which is red and itchy. She also has some neuropathy(numbness and pain) of the finger tips and sides of her feet. The newest issue happening each on Monday and Tuesday is being lightheaded upon rising while seeing things through a Kaleidoscope and hearing Cicadas. Most of these things can be blamed on Tacrolimus being on the high side, but it is right where it should be. Not sure what to make of everything, but still just thinking Tacro is the bad guy. Just an update on the HHV6, it is still low positive. Please pray, pray, pray for these things. We are so thankful she doesn't feel completely horrible(easier for me to say). We had to forgo our trip to Great Falls, MD today, but we still hope to make it another time. I love the freedom of having a vehicle. I am so thankful for the ease of getting to places on & off campus and field trips for enjoyment and recovery. I have learned how to get into the garage at Woodmont without all the maneuvering. We have to go back to the hospital again on Friday to get labs rechecked. Another issue which would be helpful is knowing whether her renal arteries are still ballooned or are the balloons failing. The NIH isn't good enough at getting what we need, so there is talk if things continue to worsen of sending her back to Methodist for the test or to another hospital out here. Because she has history at Methodist, that seems to be the most reasonable approach instead of going to another location like Washington Hospital Center. It could be done quickly and not miss much of a beat here. Really just pray that God guides our path as always. We would all breath a sigh if the CR was lower from the fluids. We'll know more on Friday. At the same time, we have to stay pretty vigilant with how her heart responds to these excess fluids. We stopped a heart medication two days ago to see if it also was contributing to the CR increase. A balancing act. Yikerz! Also, the name of a new game Karly and Zach have been playing. It has been really great being at Woodmont. It offers some great things for long term families in that we can be more independent...part of community events. Sunday we will be walking to a Farmer's Market/Craft Fair, hopefully as a house, then grabbing lunch with the assistant manager. Monday some DC Chefs will be making yumminess in the Inn Kitchens therefore the event is called KitchINN. We will be attending and showing our thankfulness to those who donated to renovate the kitchens. Then we are off to the movies with the hospital rec. therapists. See what I mean...busy. Anyway, we just take one day at a time and are often changing our plans. Never-the-less, all is well. Thank you for praying!
Love,
Mom