Liver Clinic 8-15-12

Yesterday, we had Elise's "liver clinic" appt at Texas Children's Hospital. It went pretty well but was generally uneventful.  She had an exam, doppler ultrasound, and labs.  The doctors said that on exam Elise's liver felt enlarged, and it appears that there is some fluid in her abdomen.  The ultrasound remains essentially unchanged from last month; there are cirrhotic nodules present and visible on Elise's liver, which does appear enlarged on ultrasound, as does her spleen.  Her liver panel is slightly improved from last month, but still abnormal, as most of her liver enzymes are elevated.  Her conjugated bilirubin is still at 0.0 though, and her INR and platelets are normal, so that's great news!  

Here's her liver panel for those interested in the details. 

Conjugaged Bilirubin:  0.0    

(click 'Read More")

ALT 85; AST 77; GGT 598; ALK PHOS 346; Albumin 4.2

Platelets 200                     

GOOD NEWS that we received is that Elise weighs 18 lb 13.5 oz now and is 27 in long, which puts her over the 50th percentile!!  The sort of bad news is that the doctors won't let her lose the NG tube yet.  Their rationale makes a lot of sense though.  They explained that the bigger she is at the time of transplant, the bigger her portal vein will be, which will reduce the risk of portal vein thrombosis (clots)--one of the most threatening complications immediately post transplant. So, I can't really argue with that. 

Crawling Right Along...

I can't believe it's almost been a month since my last blog entry.  The days go by SO fast.  Anyway, Elise is now crawling, even if it is sort of "army crawl" style.  She's definitely getting around....and fast!  I hope she's not burning up too many calories because we've been working really hard at packing in the calories and fat!!    (click "Read More")
Currently, Elise weighs 18 lb 6 oz.  The transplant team goal is at least 20-22 lb at the time of transplant, so I feel fairly confident that she will get there....probably very soon!!  She is now taking about 25 oz Pregestimil formula mixed with Polycose (30 cal/ oz), and NG tube feeds 8 hours/night (45 mL/hr).  OH, and she's increased the amount of baby food she is eating each day now too!!  She usually eats about 1-2 containers stage 1 or stage 2 food mixed with Polycose powder and MCT oil.  I'm really looking forward to our next "weigh-in" with the dietician to see what she has to say!!
In other news, Elise is finally sleeping every night in her nursery!!  For the longest time, I couldn't stand to leave her upstairs in her room because I was afraid that the NG tube would cause some sort of hazard, and I wouldn't be there to intervene.  But, I'm pretty sure now that the worst "hazard" I will encounter is the occasional soaked bed due to Elise having pulled out the NG tube in her sleep.  You would think those pumps would have some type of sensor which would enable them to stop pumping if the tube is pulled.  But that makes too much sense.
So we are hoping to see everyone at "Transplant-BOO-looza"-- the fundraiser planned for October 20 benefiting COTA for Elise.  Please check out the "Activities & Events" section of this website for more info on "Transplant- BOO-looza" as well as all the other great fundraisers currentl in the works!!   And don't forget about our "PRAYERS for ELISE" silicone bracelets!!  Please email me at ebabinlcsw@gmail.com or contact me through Facebook if you'd like bracelets.
Finally, I'd just like to say "thank you" to everyone who is following Elise's journey and sending prayers and positive thoughts our way!  The support has been overwhelming, and we are most appreciative.  Finding ourselves in this particular situation has been quite humbling, and we have really been touched by the care and concern of so many people, including family, friends, and even people we do not even know.