Muriel had a fantastic trip to the hospital!!! She has not lost too much weight and NP Carrie said it was to be expected seeing as she is on all the diuretics and the fat free diet. We were hoping to get rid of one of the diuretics, diuril, and only have lasix, but only one dose of diurul was removed from her medicinal regime. She had blood drawn from a fantastic phlebotomist, one needle stick was all it took. From the blood work, we learned her kidneys showed she was dehydrated (expected) and Muriel's potassium was low. Carrie spoke with Dr. Sajan and considered adding another supplement for her, but instead upped the aldactone and suggested bananas and kiwi. Muriel isn't loving bananas as of late, which is a bummer since she used to eat 2 for breakfast every morning. We bought kiwis and gave her a bite; she actually liked it! Then I thought, "Hmm, better check those for vitamin K" (interferes with her Coumadin blood thinner). Of course, kiwi has vitamin K in it, so those are out. My new solution for sodium and potassium: Gatorade. No more water, only Gatorade! It's got both, so hopefully this helps. Her chest xray showed no fluid build up and Carrie was as relieved as we were. After I called Monday to report her low saturation levels, Carrie said she expected to see fluid, but no! We see Dr. VanBergen next Thursday and hopefully he will give us more good news.
I'm sorry for not posting sooner. I have been spending 2-3 hours a day on the phone with the insurance company trying to get them to approve medications and equipment. We have had to pay out of pocket for the Viagra, which is a very costly drug! On several occasions, we have joked that Jeff should go to the doctor and get a prescription! We have had wonderful support from Dr. Ilbawi's nurse practitioners Jane and Carrie. Dr. Imran has joined the fight and himself called the insurance company. This irks me because those people have far better things to do, like saving childrens' lives!!!
On Wednesday, we went for a walk with our O2 to go and Muriel feel asleep. We took a pic of her without her oxygen when we replaced the tegaderm and duaderm and nasal cannula. Muriel continues to get stronger every day. She has started to use a baby walker to get around and occasionally takes a few steps on her own. It has been a joy to hear her laugh again. She celebrated her 18 month birthday on Sept. 29th. Time flies!
No comments:
Post a Comment