Early Thursday morning (2am) we made our first trip to the ER for one of our children. Gracie had been desating all day (Wednesday) long, I attributed it to the decrease in her diuretics and just continued to adjust her oxygen flow. Finally around 8:30pm I called the cardiologist because she was sating in the low 60s and sweating profusely and I was concerned. Dr. Jou told us to resume the previous schedule with the diuretics and when we came up the next day we would get an x-ray to see if her lungs were wetter.
Gracie improved after I gave her a dose of bumex but by midnight she began to desat again. I kept increasing her oxygen level but there was no improvement in her sats. We went from 1/2 liter to 2 liters and she was still sating in the high 50s. I gave her another dose of bumex around 12:30am but didn't see much improvement after an hour so I decided to take her up to Primary's to be safe. We loaded into the car at 2:15am and pulled up to Primary's just before 3am.
There was no one at the Emergency room so we got in right away. Blood work was ordered along with an x-ray, unfortunately everything took forever to get because of the weekly test of running on the generator. So finally at 6:30am we were told that Grace's x-ray looked better than it did on Monday and her blood work all was fine. Their conclusion--she was withdrawing from the diuretics but I fixed the problem by giving her the doses of bumex and it just took a longer time than what is expected to improve.
We were discharged from the emergency room at 7:30am and instructed to wait in the cardiology waiting room for Dr. Jou to come and talk to us, since we had to stay up in SLC for Grace's 10:30am appointment with the Plastic Surgeon. We were all tired, Jason only got a couple of hours of sleep before we left our house and was able to doze while we waited in the emergency room. Me--I was being fueled by my best friend--caffeine--I had more Dr. pepper and diet coke than one person should have in a 24 hour period. Anyways...Dr. Jou found us at 10am and he was baffled--like doctors always are with Grace. He is not sure it was the diuretics causing the reaction, to him it sounded more like withdrawal, but she wasn't coming off of any pain meds and no changes were made to the ones she is taking. So Grace is back on her full doses of diuretics and is still recovering. She slept fairly well last night, hopefully she will continue to get the rest she needs so that Jason and I can get our rest too.