Hmmmm....well....Elise had her "liver clinic" appointment today at Texas Children's Hospital. We had lab work done and met with her hepatologist (liver doctor) Dr. Fishman, the transplant coordinator, and dietician.
The good news is that she has continued to gain weight well, currently weighing 17 lb 11 oz. She is 26.5 in long. Her growth chart now looks perfect, showing she is in approximately the 55th% for weight: height!! Her doctor and dietician agreed that we can now decrease her NG tube feeds to 8 hours/day...she had been at 12 hours/day since April.
The bad news is that her liver enzymes are going in the wrong direction, according to today's labs; almost all of her numbers are up from last month.
June 5, 2012 July 11, 2012
AST: (normal 20-60) 58 99
ALT: (normal 6-50) 45 104
GGT: (normal 10-160) 451 665
ALBUMIN: (normal 2.8- 5.0) 3.9 4.5
DIRECT BILI: (normal < 0.5) 0.0 0.0
So, anyway, her doctor is supposed to call me tomorrow to let me know if we need to move her doppler ultrasound appt up and get it done sooner rather than next month. Other than that, there's not much else we can do differently or as an intervention. I mean, she's already listed for transplant.
I remember when Dr. Fishman dropped the "bombshell" on me that he wanted to refer Elise to the transplant team....he said that he expected her liver enzymes to start climbing, and that he wanted to "get all the ducks in a row" and be prepared for when her liver declares that it's done. After looking at today's labs, I'm starting to think he may have been right. Imagine that. I swear, my denial never ceases to amaze me.
The good news is that she has continued to gain weight well, currently weighing 17 lb 11 oz. She is 26.5 in long. Her growth chart now looks perfect, showing she is in approximately the 55th% for weight: height!! Her doctor and dietician agreed that we can now decrease her NG tube feeds to 8 hours/day...she had been at 12 hours/day since April.
The bad news is that her liver enzymes are going in the wrong direction, according to today's labs; almost all of her numbers are up from last month.
June 5, 2012 July 11, 2012
AST: (normal 20-60) 58 99
ALT: (normal 6-50) 45 104
GGT: (normal 10-160) 451 665
ALBUMIN: (normal 2.8- 5.0) 3.9 4.5
DIRECT BILI: (normal < 0.5) 0.0 0.0
So, anyway, her doctor is supposed to call me tomorrow to let me know if we need to move her doppler ultrasound appt up and get it done sooner rather than next month. Other than that, there's not much else we can do differently or as an intervention. I mean, she's already listed for transplant.
I remember when Dr. Fishman dropped the "bombshell" on me that he wanted to refer Elise to the transplant team....he said that he expected her liver enzymes to start climbing, and that he wanted to "get all the ducks in a row" and be prepared for when her liver declares that it's done. After looking at today's labs, I'm starting to think he may have been right. Imagine that. I swear, my denial never ceases to amaze me.
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