Avery’s heart rate drops when she sleeps. She has been this way since she was an infant. It use to scare me and the doctors taught us to blow on her face to wake her “out of it”. When she came home from PICU, I didn’t feel like she was ready because I wasn’t ready for her to stop breathing on me. She was sent home with a machine that had an alarm if she stopped breathing. Well almost 5 years later, she still does it. It’s not so bad anymore because she doesn’t stop breathing completely. Well this concerned the night nurses and they requested she take an EKG test Sunday morning. She was awake and it came out fine.
After the EKG test she threw up out of the blue. Not sure what that was about. Her hemoglobin is low so now they want to do blood transfusion. The normal range for the hemoglobin is 12 and her current level is 6.8. It can be due to her losing blood when she was passing the blood clots in her urine. BUT her urine is clear now!!! Before they do the blood transfusion, they are giving her a hormone drug via SHOT that will help her kidney produce red blood cells. The nurse says it hurts (stings) so I’m not looking forward to Avery getting this but I know she needs it.
Today, her creatinine is 2.6 so that hasn't changed. Avery has been giving her surges of steroids for the past 2 days to slow down the rejection but it's not working yet. The doctor said it might take 3 treatments before we can see a difference.
She had lots of visitors today! Grandparents, Aunt Karen, Uncle Noe, Tio Pito, cousins Jasmine, Violet, Isabelle and Rema. Her most favorite was her big sister, Alexa! She was so happy to see her.
Avery's hates being on bed rest. She isn’t supposed to be running around, playing or moving around. Late in the afternoon her cut started bleeding and leaking where she had the biopsy. I think she was up too much when. They called the doctor because her tummy was very hard and big. The doctor ordered to have more blood drawn to check for blood loss and possible internal bleeding. Internal bleeding??? All he wanted to do was draw blood to check for internal bleeding?!! I expressed my concern and said there had to be another test to check for internal bleeding. He ordered an xray. Not sure how you can check for bleeding with an xray but at least test show no blood loss.
While we were waiting for the hemoglobin to test for blood loss, Avery had to get her shot of hormones. She hated it and so did I. I asked for the results of the blood work and guess what….. they lost the blood; the lab said they never got it so they had to do it again. When test finally came back it didn’t show any blood loss. Back to bed rest for Avery!
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