Liver Clinic 7-11-12

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.

Proud Mommy!

Today, I brought Elise to Texas Children's Hospital for her psychological testing appointment, which is typically part of the transplant evaluation. In Elise's case, there was no grave concern by any of the physician's regarding her physical, social, and/or emotional development, so we didn't get in for the testing until now.  Anyway, I initially thought this was going to be a waste of time.  I mean, really, psych testing on an infant??  It actually went very well though.  The psychologist was great with Elise, and very knowledgeable about pediatric liver disease too, which was nice.  Of course, she probably evaluates all the babies waiting on transplant there, so I'm sure she's made it her business to be well-versed on the subject.       

Anyway, using a combination of direct play/ interaction with Elise and the answers I provided to her questions, the psychologist completed several different infant and early childhood psychological and developmental assessments....and Elise "passed" with flying colors!! Elise is currently 8 months old, and she scored between 8 and 10 months old in all spheres! Her highest scores were in fine motor skill development and social development.  I'm having her mail me a copy of her complete formal report once it's done.  

So, despite Elise being born 5 weeks early, spending a total of 7 weeks thus far in a hospital bed, and having an NG tube since April which complicates activities such as "tummy time," Elise has managed to meet and even surpass the developmental expectations for babies her age!  That makes me one happy and very proud mommy!!  

After Elise's appointment, I enjoyed visiting with a fellow "liver mom" Jennifer and her kids. Jennifer's middle child had Biliary Atresia and had a liver transplant a little over 1 year ago....she looks so wonderful!!  It was great to see them!