To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Friday, November 15, 2013

Friday, November 15, 2013 Update

Well, today held some very good news and some not so good news. We learned from Lenah's upper GI study today that she DOES NOT have malrotation of the intestines.  This is wonderful news.  In children with heterotaxy syndrome, malrotation of the of the intestines is very common.  Malrotation of the intestines can cause long term difficulties.  If you are curious you can read about heterotaxy here.  The not so good news is that she does have an obstruction/stricture in her intestine.  The plan is to do surgery on Tuesday to resection her intestines and put in a G-tube for feeding after she heals.

 For those that are interested, here are her liver lab numbers:

Mon 11/11                               Thur 11/14
GGT  1132                                    887
AST   249                                     356
ALT  256                                      294
Conj Bili  7.6                               6.6
Unc Bili   1.9                                 1.9

I am very curious to see how they change next Monday.

Her weight is now up to 8lbs and 9.6 ounces.  At birth she was 7lbs 3 oz, but her weight had dropped down to 6 lbs even at one point.  Her length at birth was 46cm (18.1 in.) and now she is 51cm
(20.07 in)

She was awake when I arrived today.  She looked like she was trying to talk again today.  When she yawned, her airway opened enough for her to make some noise (vocalization) when she exhaled and it startled her some. It startled me, too.    After the first time she was extubated, they found that her vocal cords were paralyzed on one side.  It was reassuring to hear her make a vocal sound today.


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