Leaving the hospital tomorrow!
It's been a very busy Monday! Lorelei was awakened early by a chipper nurse with a wheelchair at her door and orders for an ultrasound of Lorelei's kidneys. No time to "hair dryer" and check twitter. She had to quickly take her Tacrolimus (anti-rejection) pill and then head down to radiology. It made Lorelei nervous that the doctors were concerned about her kidneys. Her electrolytes have been out of whack for several days. One doctor even asked Lorelei if she's been eating lots of bananas or avocados. She said "No! You guys won't even let me have any fresh fruit or vegetables!" But even without high sources of potassium in her diet Lorelei's potassium levels have been high (hyperkalemia.) And her magnesium is low (hypomagnesemia.) So is her carbon dioxide level (hypocapnia.) The ultrasound on her kidneys didn't seem to show anything alarming so we're assuming the electrolyte imbalance is being caused by the Tacro. Her Tacro level has been high. She's also had some back pain and tunnel vision when she stands up. These might be Tacro related too. That's not uncommon. They will watch it closely and adjust accordingly. She still gets to leave the hospital tomorrow!
At 1:00 today we took our "test" over the things we learned in the CVC class yesterday. I had to demonstrate competency at changing her central line dressing, changing the caps and flushing with Heparin. I passed!
During the "test" of our nursing skills they infused a dose of Cefapime into Lorelei's subclavian central line. (This is the antibodic to treat her earlier gram negative sepsis.) As she moved around slightly during the test her line occluded. The pump alarm went off five or six times before we finally decided to rethink the plan to remove her PICC line and leave that line. (That was the original plan.) This time the subclavian line was occluding even when she was lying down. So we changed the plans and opted to remove this line instead of the PICC line from her arm. It was amazing to see how easily it could be removed in light of how difficult it was to get in there in the first place!
Lorelei got sick after that procedure. I hope that doesn't affect her love of Panera because it didn't stay down. We're running out of foods for her to love then hate! After her ABVD chemo she was ruined for Hideaway's fried ravioli. R-ICE chemo ruined her for Hidden Valley ranch dressing. Adriamycin made red Gatorade a forever no-no. And now Panera is in jeopardy. At least Scooby Snacks are still okay. (Thanks Blake and Trisha.)
Then Lorelei finally went to sleep. (Beating cancer is hard work.) While she was asleep I visited with a nice St. Louis businessman and Bay area church staff member who was here for his own cancer treatment. He had learned of us through a common friend from Oklahoma. He and his wife have been blessed and have an apartment at their home near here that we can use! Their generosity blew us away. Their home is a bit further away than we feel we should go (in League City) but it's the only option that has seemed to work well for our other housing needs. If we hit the traffic perfectly we should be only 20 to 30 minutes away from the hospital. (That's a big if.) Ideally the doctors want us to be only 20 minutes away from the ER here. If Lorelei were to spike another fever every minute could count. So please pray with us for some supernatural protection over Lorelei as we stay in this generous family's guest apartment. Until that apartment is ready for us (some time after Lorelei's birthday on the 19th) we will stay at the Ronald McDonald House. If concerns heighten over the distance to the guest house we may decide to stay at the RMH for the entire 100 days.
Some of you have asked for a mailing address. Please use this one: Lorelei Decker
Ronald McDonald House
1907 Holcombe Blvd.
Houston, Texas 77030
Posted on Mon, August 12, 2013
by Andrea Decker