Blessings

Praise God, from whom all blessings flow.  

The past few days have certainly been about blessings.  For those of you who follow me on Facebook, some of this will be redundant, but hopefully I'll be able to add a little detail to that which you already know.

"The Greatest Hero I Never Met was the Organ Donor Who Saved my Daughter's Life."   

I have some incredibly special news to share. As some of you may know, about 1 month after Elise's liver transplant, I wrote a letter to her "donor angel's" family to express our gratitude for their selfless decision to DONATE LIFE during their most tragic time. I had no idea whether we would ever hear back, but oh how I hoped and prayed that they would receive our letter and want to share their story with us. We released our identifying information w/ Life Gift about 3 weeks ago and waited. Yesterday afternoon, our donor angel's father sent me an email, thereby establishing contact between our families, and he introduced me to our donor angel, Julia. 

Julia was a 20 y/o loving mom of a 3 yr old little girl...a daughter...a sister...a friend...treasured by so many. She loved to eat Pecan Mexican popsicles, mexican food, and Raising Canes chicken. She loved music, especially Coldplay. An honors student, she went to college on a partial scholarship and was a nursing student in Houston, almost finished her clinicals, and looking forward to saving lives. Although her life was suddenly cut short, she has indeed saved many lives, and she will continue to do so through her legacy. She is missed every single moment of every single day. 

Shortly following Elise's birth and diagnosis of Biliary Atresia, we were told that Elise would likely require a liver transplant before age 2 in order to survive. My friends, Elise will turn 2 years old in October, and as you all can see, she is thriving, with a wonderful prognosis for a long and happy life! But we know that this would not be possible without our "donor angel," our hero, and her family. According to her father, if we want to thank anyone though, it should be Julia and God, as she registered herself as an organ donor; he says he simply fulfilled her last wish. For all this, we will be eternally grateful.

PLEASE consider registering to be an organ donor...save lives....be a hero. 

As I reflected over the past few days, I have been overcome with emotion, especially yesterday.  I cried thought the day, and various things set me off.  At one point, I had to get out of the house, so in honor of Julia and National Ice Cream Day, we drove to Pearland, to the nearest La Paltera, and ordered Pecan Mexican popsicles.  I loved seeing Elise's delighted response!!   Although Ethan didn't want much to do with it, Elise ate her entire popsicle and was not very happy when it was gone. 

This past Friday, I received a call from Elise's primary hepatologist (liver doctor) and her transplant coordinator with something of an update regarding her last not-so-good lab results.  They apparently received the results of additional tests which indicated Elise most likely had a virus causing the elevated liver enzymes on her last check; her EBV was slightly elevated again and some of her other counts were out of range. So, the med changes, including the steroid order, was canceled.  That was really GREAT news....not just because it meant less meds, but because a toddler with "roid rage" is a difficult scenario with which to deal. 

This morning at 7:00 am, I had to bring Elise for her scheduled labs at Texas Children's.  It was an incredibly long day waiting for results.  BUT, at approximately 1:00 pm, our transplant coordinator called me with the most amazing news:  Elise's liver panel looks terrific!!  Beautiful! Her liver enzymes are almost back to perfectly normal, but well within the team's goal range already! 

And her liver function tests are great! 

FOR anyone interested in the specifics, here you go:

Last week, 7/16/13:      AST 154/  ALT 150/  GGT 36/  direct bili  0.

This week, 7/22/13:    AST 61/   ALT 79/     GGT 31/  direct bili  0;  albumin 4.

Also, the goal for her Prograf (immunosuppression) level is 3-5;  her current level is 4.1.  Yay!! Our next "liver clinic" appt will be next Wednesday 7/31/13....no more labs until then!!

Thank you all for continued prayers and support and for following Elise's journey.  Please join me in praying for our "donor angel,"  Julia, and her amazing family. While tomorrow marks 4 months since Elise's liver transplant and "gift of life," I remind you that it also marks 4 months since this family lost Julia....a most beautiful life and beautiful soul.  As I mentioned earlier, we are blessed to have received such a meaningful response from her family, and we look forward to hopefully meeting them sometime soon!

Erin

A Game of Cat & Mouse

Today hasn't been such a great day.  Elise had blood work drawn this morning at TCH. It was a hard draw-- they had to stick her 3 times to get the blood needed.  Then, I literally waited all day for results.  I was really hoping that "no news is good news," and that the results would be good and "worth the wait," but no such luck.  Elise's liver enzymes are significantly elevated.  The first thing our transplant coordinator said this afternoon was, "Let me tell you the plan before I tell you the numbers because you might get worked up."  Who? Me??  Lol.  Well, once I heard the plan, it became very clear to me what was up, besides her liver panel. I asked, "Is this early rejection?" as the following numbers glared back at me from my spreadsheet…  

AST up to 154 from 53;  ALT up to 150 from 39;  GGT up to 36 from 16. 

At this point, I spoke to our liver center director, Dr. Shepherd (currently covering for our attending liver doctor, Dr. Fishman) who said to me, "Listen to me, I'm not worried.  If I was worried, we'd have you bring her in to the hospital for a liver biopsy. This type of jump in numbers is very much expected since we have been running her immunosuppressent level so low in order to chase down her EBV level. Now we will double her Prograf and start her on an 8-day taper of the steroids, and her liver panel will get right back in -check."  He went on to say that it's quite possible that we will see another rise in her EBV, however, over the next couple of months.   I asked, "So, basically, we're looking at having to play this game of "cat and mouse" indefinitely to keep her liver happy and EBV out of the picture?" Dr. Shepherd said, "yes." I took a moment to breathe, and then asked, "Tell me again why you're not worried about her current liver panel?"  

According to Dr. Shepherd, she's in good shape for several reason:  

1) she's a "fresh transplant," just 4 months post-op, and under normal circumstances (meaning no EBV issues), her prograf level should be running at 8-10; however, in Elise's case they are having to run her level at 2-3 in order to control the EBV.  Elise's prograf level today was 2.0, which Dr. Shepherd says is typical for patients at least 2 years post transplant.

2) Although her AST and ALT are increased significantly, her GGT is still generally within normal range. GGT is the major indicator of rejection.  Dr. Shepherd explained that elevation in AST and ALT simply mean that her liver is irritated and getting a little upset w/ the current situation, so the plan needs to be tweaked. 

3) TCH liver/ transplant team is "on it." 

And now, here's the PLAN:  We are to increase her Prograf dose to 1 mL twice daily and re-start the steroid Prednisolone on an 8-day scheduled taper of 3.3 mL per day x 4 days followed by 1.7 mL per day x 4 days. She will get repeat labs next week on 7/22/13, and next liver clinic (also to include labs) will be 7/31/13. 

Our transplant coordinator and Dr. Shepherd both expressed full confidence that this PLAN will bring Elise's liver panel back down to normal, and we can all be happy and calm again.  

I"m always calm, cool, and collected though, so we have that much already in the bag!!