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.  

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! 

Fever, Fever, Go Away!

Elise is currently well into day #2 of a persistent fever.  She suddenly spiked the fever around 10 am yesterday. I picked her up from daycare and brought her to the doctor yesterday afternoon. Her pediatrician ruled out ear infection first, and then she ordered some blood work. Elise's white blood cell count was a little elevated at 14,000 (normal range is 6,000-10,000.)  To me, an elevated white blood cell count is a sign of infection somewhere in her body, and my first thought--and major fear-- is Cholangitis, an infection of the liver. Historically, her doctors have always admitted her to the hospital for fever because it is so critical that they protect her liver and treat for Cholagnitis once other sources of infection are ruled out.   

This time, however, her pediatrician spoke with a doctor on the liver/ transplant team at Texas Children's Hospital and decided to just treat the fever with Tylenol and Ibuprofen "and see what happens." I think the main rationale for taking a more liberal approach this time is that, as Dr. Pocsik put it, "She is the healthiest looking sick baby I have ever seen." I'm obviously praying that this fever disappears, but that hasn't really happened yet. The fever breaks every time I give her medicine, but then it returns after about 6-8 hours. 

So, anyway, we'll continue to watch her over this weekend. I'll be bringing her back to the doctor if she's still battling fever on Monday.  At that point, if she still has fever, I'm almost positive that I will have to bring her to Texas Children's for further testing.  

Well many thanks to all of our wonderful family, friends, and those we don't even really know who are praying for our little Elise and sending positive thoughts our way.  The support means so much to us!! :-)

Cautiously Optimistic

So, Elise's doctors at Texas Children's Hospital (TCH) have repeatedly told us that it is critical that Elise gain as much weight as possible prior to transplant. Ideally, they would like Elise to weight at least 20-22 lb at the time of the operation, as this ideal weight seems to correlate with a decreased risk of complications such as clots in the portal vein. When they first placed Elise's NG feeding tube, Elise was far behind her goal, not even on the growth charts, weighing less than 12 lb at age 6 months old. Today, she is 8 months old and weighs exactly 17 lb 0 oz, putting her in at least the 25th percentile for weight. Rather than being ecstatic, I am cautiously optimistic, because just yesterday, I realized that her tummy is more distended than it has ever been previously.     (click "read more")

We have already been old that she has "Ascites," and her doctors predicted that it would soon be getting worse. So all this begets the question, is her current weight gain true body mass or is it fluid? Well, we have an upcoming "liver clinic" appointment at TCH, so I'm hoping to get a doppler ultrasound to check things out. In fact, I may insist on it.  

On the Road to Transplant...

So, as of this past Monday, 6/18/12, Elise has been formally placed on the liver transplant waiting list.  I got "a call" on Monday...not to be confused with "THE call" from the transplant coordinator--Julie-- saying that Elise is officially listed with a PELD score of -3. The PELD (Pediatric End-Stage Liver Disease) score basically reflects priority on the wait list, or risk of mortality without transplant. So considering this, it's not a bad thing that Elise's score is low right now. Her doctor believes that he she will be granted exception points within the next 30 days or so, which will increase her PELD score somewhat. We'll see. Bottom line]is that we now need to be prepared to get called for transplant at any time. When it's a match, it's a match!"                     (click below to read more)

Over the last few days, I have noticed that I'm obsessing over every little thing. I have the urge to call the doctor's office with all of these little questions I have, such as "What's Elise's vitamin-D level?" and "What's her platelet count?" and "Are her bile salts high or low....or normal?" I've now had a revelation:  I'm directing my anxiety and energy towards all of these little, unthreatening questions that can be easily answered rather than confronting the BIG question on my mind which no one can answer: "When is this transplant going to happen, and will my baby be okay??"