a little and a lot

Brooklyn's Medical Updates

For all medical updates on our sweet Brooklyn, look no further than this page!  Most recent updates will be posted at the top..

MONDAY, 4/6/2015

Last week's trip to Chicago went well.  Brooklyn had her hernia surgery last Monday morning, and she is recovering nicely.  The surgery itself was quick, and they kept her overnight for observation due to her "high risk patient" status.  It was good to experience in-patient life for 48 hours, and I came home with a good sense of what we need for our longer stay during transplant.

The 30 day hold on transplant (after B received her MMR vaccination last month) is lifted TODAY.  This means that any day, any hour we could get "the call."  We'll have an hour to respond to the call if we miss it, and we'll have 24 hours to drop everything and get to Chicago.  Please pray for our preparations as we make our "Liver Call List" and then wait, wait, wait.  Pray for perfect timing, for all of our hearts as we wait and prepare, and for sweet B to get her liver soon before she gets any sicker.  We'll be letting you know soon how you can support and encourage us when it's "go time!"


SATURDAY, 3/28/2015

Our Chicago trip & Brooklyn's hernia surgery has been moved up due to the scheduling needs of her surgeon.  (I imagine liver transplant surgeons have a lot of rescheduling going on!)  The surgery will now take place MONDAY, MARCH 30, instead of Wednesday, April 1.  We were able to reschedule our own flights/arrangements, and everything is set for the week.  Please keep Brooklyn (and her mommy traveling companion) in your prayers this week!


SUNDAY, 3/8/2015

Brooklyn's next trip to Chicago will be for a surgery to repair her inguinal hernias.  Her liver transplant surgeon will be doing the surgery, and I'm glad he will get a chance to get his hands on her before transplant time.  The surgery is scheduled for April 1.

A few pieces of information were learned on Friday while asking questions about the hernia surgery.  First, I asked our transplant coordinator at Lurie if I was crazy to be paranoid about being away from my phone--was it definitely too early to expect "the call?"  She told me that with Brooklyn's blood type (A) and her current PELD score (13), it is possible that we could get a call any day, any hour.  In fact, they had already received several offers for livers for Brooklyn in the 12 days since we'd been listed, but our transplant team had turned down the offers because they weren't great matches.  That information shocked me!  I had recently been feeling like I needed to steel myself for things getting really bad before we would get a transplant, and while that may indeed happen, it buoyed my hope to hear that we had already had offers.

(Because Brooklyn is stable, our amazing team at Lurie feels we have the luxury of being a little more picky about accepting the best liver "match" possible.  As B's health declines, her PELD score will increase, which will give us greater chances of getting offers, and our team will lower their standards of the type of match we will accept.)

In discussing what needed to happen before hernia surgery and in light of this news that we could get the transplant call any day, it was determined that we needed to finish Brooklyn's MMR vaccinations ASAP.  After transplant, B will be immune-compromised due to the medication she will receive that keeps her body from rejecting her new liver, and she won't be able to receive any live-virus vaccinations.  Ideally, all other children receive vaccinations, which then protects kiddos like Brooklyn who are unable to be vaccinated.  But because of the recent measles outbreak, the doctors feel it is of utmost importance for B to finish her MMR vaccination before transplant.  If you receive a live-virus vaccination BEFORE transplant, you can't receive a transplant for 30 days following.  So, we rushed Brooklyn right over to the pediatrician on Friday and immediately took care of that.

Brooklyn is still listed on the transplant list, but she's on an internal 30 day "hold" at Lurie, which means the soonest we can get the call will be April 6.  (This is good timing, because she will have just recovered from hernia surgery by the time the hold is lifted.)

Sorry for the longer update!  We'll keep you posted on the hernia surgery.


MONDAY, 2/23/2015

This update will be a little lengthier than most to bring you up to speed.  Here's a recap of all that has happened up until today:

- We returned from China with Brooklyn on the evening of January 24, 2015.

- On the morning of January 26th, we had an appointment with our GI team here in Memphis (at LeBonheur Children's Hospital).  They took labs and did a quick check-up.  The results of those labs were that she has some normal numbers and some bad numbers.  Her bilirubin level was 15.4 (a normal number is 0).

- Later that first week home, we learned that our insurance would be requiring us to have Brooklyn's transplant done at a "center of excellence" for pediatric liver transplants.  We chose Lurie Children's Hospital in Chicago.

- We traveled to Chicago last Monday, February 16th (with much difficulty getting there in the midst of a snow/ice day in much of the South) for an evaluation which would result in getting Brooklyn listed on the transplant list.  It was a very long day (8:15a-5:30p) of tests and meetings.  They did more labs on Brooklyn, and her numbers looked similar, although her bilirubin level had risen to 20.  Our GI doctor unofficially guessed that she will need her new liver within the next six months.  They then set to work getting us listed on the transplant list, which would need to be processed through our insurance first.  We came back to Memphis on Wednesday, February 18th.

Ok, that brings us to today.  As of today, Brooklyn is officially listed on the transplant list with a PELD score of 13.  (PELD stands for Pediatric End-Stage Liver Disease, and the score gives a kind of ranking of the severity of your liver failure.  I think it technically goes up to 40, but it seems most kids receive a transplant by the time it reaches somewhere in the early 20's.  And that is the end of my very limited initial knowledge on this subject!)  We're still waiting to hear if they will write a Letter of Exception asking for any extra points, which is a common thing when the case warrants it.  Brooklyn is a small size/weight and she has ascites (fluid in her belly), which are two things that can warrant exceptions, although I'm not sure if she's at the point when they would ask for exception yet.  Her PELD score will be re-evaluated every 3 months.

Updates will usually be much shorter, for your ease of reading them as well as for my ease of writing them!  Keep checking in, and I'll make sure to post on our blog and Facebook when we've added any new info.  Thanks for your prayers, everyone!

Adopting Rhet: Click on the timeline above to read more