Biliary Atresia Awareness Day!

Today, December 1, is National Biliary Atresia Awareness Day. Where better to spend this day than at Texas Children's Hospital, where Elise's journey with Biliary Atresia and liver transplant first began.

Last night, Elise developed a fever, after several days of runny nose and cough, and upon further examination, I found that she was breathing approx 60 times/minute with a pulse of about 180, and she was "retracting," or working very hard to breathe. I called the TCH liver doctor on call to report her symptoms, packed a bag, and brought her in to the ER upon his request. 

Because I've been to the TCH ER approx 20 times with Elise having fever over the past 2 years, I am very familiar with the "typical" orders. Well, the ER doctor last night must not be familiar with moms who are familiar, because he came across as somewhat irritated when I questioned him about whether he had consulted the liver team yet.  He said, "No, this is clearly a respiratory issue, not a liver issue." I responded, "No sir; Elise is 8 months post- liver transplant presenting here with a fever; regardless of whether she has acute respiratory symptoms, it most definitely is also a liver issue, and I'm going to need you to call the liver team. It was the liver doctor on call who advised us to come here to the ER." I further explained to him my concerns that her body's immune system is obviously working hard to fight whatever infection she has, and so precautions need to be taken to evaluate her liver function and ensure that her immune system is not trying to attack it.  I asked for a complete set of labs including a CBC, chemistries, liver panel, EBV, CMV, blood cultures, viral studies, and a chest x-ray.  In a condescending tone, he told me he would draw a liver panel "if it makes you feel better." I literally begged for a CBC and blood cultures at the very least, citing previous admissions during which Elise had to have blood drawn repeated times to obtain cultures.  

At approximately 11:30 pm last night, Elise's condition worsened: her oxygen saturation dropped into the 80s,  and she was placed on oxygen.  Our ER doctor came into the room and ordered a chest  x-ray (yes, the same chest x-ray that I had requested 2 hours earlier.) The x-ray showed pneumonia. As he was telling me this, he said, "Ms. Babin, I know you're going to be irritated with me, but I need to order some more blood work; in order to start antibiotics, we need blood cultures, and the liver team also wants a CBC, chemistries, and EBV.  Of course, I consented, but not without sharing with him a few of my thoughts.  He then assured me that the additional blood work would be collected and antibiotics would be started as soon as possible.  This was approximately midnight last night.  Around this time, the nurse came in to administer a dose of steroids which I declined, and I indicated that I would explain my reasoning to the ER doctor when he could come to speak with me. He came in, and we discussed that Elise has a history of reactive asthma symptoms, but due to her known EBV issues, she is not to have any steroids for the treatment of respiratory symptoms. The intent of Elise's hepatologists has been to minimize her exposure to immunosuppresents as much as possible, and I assume he is aware that steroids are in fact an immunosuppresent. I noticed that he was standing there with his arms crossed, which is not surprising to me since he was"closed off" to everything I had suggested or requested since our arrival in the ER. I just don't feel that this is acceptable, as I will will not just sit there and take a passive role in her care. 

Imagine my surprise, when at 1:00 am this morning, the transporter came to escort Elise and me to our room on the Liver/GI floor....before any blood work or antibiotics were started. I expressed my displeasure but agreed to go, indicating that I would obviously be much more comfortable under the direct care of the Liver/GI team. Upon arriving in our room, I inquired regarding the results of the liver panel which had been drawn on its own hours earlier.  I was told that due to a "lab error," there was no result, but they would repeat it with the blood work they were preparing to draw.  Around 3:00 am this morning, after the additional blood work, Elise received her first round of antibiotics. Elise fought through the night with the oxygen cannula, and she eventually weaned herself off of it by simply refusing to keep it on. At approximately 7:00 am, I asked the nurse for the results of the repeated liver panel. She informed me that the repeated liver panel was also apparently canceled by "someone" who thought it was an error since it was already drawn.  I couldn't believe what I was hearing, and at that point, I called administration to request that a patient care advocate come to my room to take my report and write up a grievance. 

The silver lining to all this? The results of her liver panel, after 3 draws, was quite pleasing! There was no significant change from her labs last month, so her new liver is doing just fine, despite the assault of pneumonia. 

Unfortunately, the attending physician who saw us today was not familiar with Elise's case or history. I was happy to hear he was going to discharge us today, but I had to object to the changes in meds he proposed. It was almost the exact same scenerio that we experienced on her last admission in early November.  He suggested we "double her Prograf" because her blood prograf level was very low.  After the reassurance I received from the team last month that I always have the "all clear' to refuse this type of med change from anyone other than her primary hepatologist, especially in light of a perfect liver panel, I did just that; I refused, referring to Elise's known EBV problems. I assured him that the reason her prograf level is low is because she is sick, and he agreed this could likely be the case. I told him that we would be following up with Dr. Fishman at "liver clinic" on Wednesday, and if he wants to make any changes, he can do so then.

What I want others to take away from this post is not simply my "gripes," and I want to emphasize that Elise's care in general by the liver/transplant team at TCH has been extraordinary. As a clinical social worker, I am well aware that mistakes happen all the time in hospitals.  My intent is for those reading this post to feel empowered. If you don't know your child or loved one's medical history and treatment plan backwards and forwards, then who does?  Even the primary physician has other patients.  I make it my business to know everything; I know "when to call" the liver/transplant team; I know the "Dos and "Don'ts" of post-transplant life; I know what over-the-counter meds Elise can and can not have; I know her allergies; I know her routine meds and dosages; I know her baseline lab results from at least the past month as well as the comparable "normal" ranges; I know the normal consistency and color of her stools, and I'm not afraid to take pictures of that which I deem to be abnormal and email to to her transplant coordinator. Because I "know," I feel confident in advocating, and I have the peace of mind of knowing that I have power and can play an active role in keeping my baby girl and her new liver healthy. 

My Speech- LifeGift Candle Lighting Ceremony

Last night, we attended the LifeGift Candle Lighting ceremony here in Houston, which is held annually in honor of organ donors and donor families. I was asked to be a guest speaker at the ceremony; I presented Elise's story on behalf of organ recipient families.  Elise's donor's sister, Holly, spoke just before me, on behalf of donor families, and our stories came together. Although very emotional, it was an amazing night. 

Because David was held up at work and was not able to attend the ceremony with us, I brought our babysitter with us to help with Ethan and Elise. At the conclusion of the ceremony, she said to me that she was happy she was able to attend and that she was going to register as an organ donor! How wonderful! :-)

Several of our family members and friends have requested that I email a copy of my speech, so I will post it here for anyone interested. 

LifeGift Candle Lighting -  My Speech

Good Evening.  My name is Erin Babin, and it is a privilege to share my story with you tonight.  My presence here at this this Candle Lighting Ceremony is a blessing for which I thank God, our donor, Julia, and her family.

Last month, my family and I celebrated my daughter Elise’s 2^nd birthday.  What a special celebration it was, but it was not one that has been long-planned, for Elise’s 2^nd birthday was nothing less than a miracle.

Elise was born with Biliary Atresia, a rare, pediatric liver disease, which is estimated to randomly affect 1 in 15,000 infants. It was not long before she began experiencing life-threatening complications of her failing liver, and her doctors at Texas Children’s Hospital said to us, “Elise will require a liver transplant before age 2 in order to survive.” As I processed this prognosis, I thought about what the “gift of life” would mean to us. Elise was admitted to the hospital many times throughout the 9 months that we waited for “the call” that might give her a second chance at life. She required a feeding tube; her belly was swollen with fluid, preventing her from reaching her physical milestones; she repeatedly developed dangerous infections requiring IV antibiotics to be administered both in the hospital and at home; she was followed by home health nurses; she required surgery, blood transfusions, and finally sclerotherapy to stop her esophageal bleeds. Through all of this, as hard as it was to watch our baby suffering and to accept that she needed a new liver, it was equally hard to accept that in order for this to happen, God would have to call another angel home.  

When we were not in the hospital, I found myself packing our free-time with as much adventure, love, and fun as I possibly could.  I wanted Elise to see the beach, the bay, the boardwalk, the parks; I wanted her to experience the seasons outdoors and to simply enjoy as much of life as she could. In keeping with this mission, my husband and I were at the Houston Zoo with Elise and her brother, Ethan, on Saturday, March 23, 2013.  My phone rang at 10:15 am and the nurse coordinator on the other end spoke the most beautiful words I have ever heard: “Ms. Babin, we have received an offer of a liver, and it is a perfect match for Elise.” My son lost his shoes somewhere en route to the hospital, but he would not be losing his sister.

From the moment we checked-in at the hospital, things moved very quickly, and so did the news of these unfolding events. As she was being prepped for surgery, I received a phone call from our priest who wanted me to know he would be saying a mass that night for Elise and for her organ donor. Of course, we have always been grateful for any prayers, but at that particular moment, I wanted the whole world to pray for our “donor angel”—for donor angels everywhere—for without the organ donor, there is no transplant, no hope, no gift of life. I felt very guilty for celebrating the fact that my baby would live while knowing that there was another family grieving the loss of their child; their grandchild; their mother; their sibling; their niece or nephew; their friend. The night of Elise’s liver transplant, I vowed that I would reach out to her donor’s family to express my heartfelt gratitude and hopefully to share Elise’s life with them.

Elise was discharged from the hospital 9 days following her transplant operation.  Over the next few weeks, we watched in awe as she began to thrive. She was eating regular toddler meals, no longer required a feeding tube, gained real weight as opposed to fluid…and she finally began to walk at 17 months old. She has been attending preschool with her brother since this past July, and she is now meeting or exceeding all of her milestones. Of course, she is being monitored very closely by her medical team, but her prognosis is excellent for a long and healthy life. The deep scar across her belly, however, tells the story of her battle, which she would have lost had it not been for her donor angel’s life-saving gift.

As I promised myself I would, I wrote a letter to Elise’s donor family about 6 weeks following her transplant. Due to confidentiality laws, at the time that I wrote the letter, I still did not know any demographics of Elise’s donor. I also did not know whether my letter would be delivered right away, as I was well-aware that the family was grieving and might not be ready then, or ever, to respond. I shared Elise’s story with them and simply expressed the hope that we could one day know and tell Elise about the person who saved her life.

Apparently my letter to Julia’s family was well-received, and we were blessed and grateful to have met them for the first time at a “reunion” arranged for our families through LifeGift. My family and I met Julia’s parents—Greg and Darlene Wardwell, her daughter—Ava, her sister—Holly, her niece—Layla, and her uncle, Joby.  I learned that Julia loved music—that music was her “therapy;” she loved coconut-pecan Mexican popsicles and Raising Cane’s chicken. Most importantly, I learned that it was Julia who had signed herself up to be an organ donor shortly before she passed away.  This decision on her part was so true to her nature and her intention to become a pediatric nurse.

We are so grateful to have learned about Julia, her huge heart, and her plans to save lives. She reminds us, “It’s never too late to be what you might have been.”

As a clinical social worker, organ donation has always been a significant issue to me.  I have conveyed the DONATE LIFE message and its importance while simultaneously helping to support families during the worst moments of their lives. I never imagined that I’d be standing here today sharing my personal experience regarding the gift of life.  But here I am.  My baby girl has turned 2 years old and is living, learning, and enjoying a full life. The gift of organ donation has restored life not only to my daughter, Elise, but to our entire family. 

We are eternally thankful to organ donors and to all their families here tonight.  I have my daughter, Elise, here with me at this ceremony, and this is the greatest testimony I can offer as to the power of the Gift of Life.  

Thank you.  

Elise, me, Ethan, my parents, and Julia's mom (Darlene,) sister (Holly,) and niece (Layla,) after the ceremony

Weekend at TCH

Clearly, I should have knocked on wood a few days ago when I told someone that Elise hadn't been admitted to the hospital in 7 months, since the time of her transplant. This past Friday afternoon, Elise spiked a fever w/ an axillary temp of 101.6.  She had no other symptoms, and since the weekend was upon us and the pediatric clinic was closed, I called TCH and paged the liver/transplant doc on-call. 

Well...it came as so surprise that the doctor told me to bring her in to the ER as soon as possible. We never even sat down amongst the 300 people in waiting in the ER....I walked straight up to the desk and told them that Elise was a transplant patient, and that I assume there was a more appropriate place for us to wait, considering her immunosuppressed status. We were promptly escorted to a "rapid-treatment" ER room, where the ER physician began examining her and looking over her history. Within about 5 minutes, the doctor placed her on "shock protocol," as her vitals (pulse, respirations, and blood pressure) were extremely elevated. Labs and cultures were immediately drawn and she was started on boluses of fluid in an attempt to stabilize her vitals. All of the preliminary tests were negative, including urinalysis, rapid strep test, flu swab, and check of her ears. At about 2 am on Saturday morning, we were admitted to the hospital under the care of the GI/liver team.  The goals was to search for the cause of the fever or source of infection but most importantly to monitor and protect Elise's new liver. 

Starting bright and early on Saturday morning, more labs and cultures were collected. Her fever had resolved by this point, and Elise's vitals were still being monitored but were mostly within normal range. Her basic blood work came back normal, her liver panel came back PERFECT (AST 39, ALT 44, GGT 14, direct bili 0.0), and her chemistries were mostly normal with the exception of her sodium bicarbonate level being low. Because of this, the GI team suspected an intestinal infection, probably viral, but decided to continue the IV antibiotics for a full 48 hours as a precaution until negative culture results could be obtained. When I realized that the attending MD on rounds was  gastroenterologist (GI specialist) and not a hepatologist (liver specialist), I became a little anxious, but I was okay with it....until push came to shove later in the evening.  

Around 5:00 pm, the nurse walks in my room and tells me that the attending GI doctor had ordered Elise's Prograf (anti-rejection med) to be increased--actually doubled-- because her blood Prograf level was "too low" at < 2.  I told the nurse she as going to have to page the doctor to discuss this with me and that it was completely unacceptable to make that type or order without even discussing it with me!! I was panicking.  Given Elise's known EBV issues, I know that her regular attending hepatologist, Dr. Fishman, has been working very hard on titrating her Prograf level--running it purposely very low at a level of 2.0-3.0-- in order to control her EBV, thereby avoiding serious, life-threatening complications. As part of this effort, I have been bringing Elise for labs almost every week!  I know Elise's "baseline" labs backwards and forwards, and for this GI doctor who has seen Elise one time in her life to order Elise's Prograf dose back to what it was when we first encountered EBV issues was extremely upsetting to me. I kept re-playing everything Elise's doctor has told me about his plan for titrating Prograf and controlling EBV: he will run her Prograf level as low as her liver panel will tolerate; liver panel results always take precedence over blood prograf level; major med changes should not take place based on labs obtained when there is an acute illness, as the lab results could be skewed. After considering all of this and talking to David, I.......called Elise's pediatrician at home. I was just desperate to speak to a doctor who actually knows Elise and her history as well as her history of titrating Prograf and dodging major EBV complications. After speaking w/ her, I felt more confident in my decision to refuse the suggested med change.  When the GI doctor came to the room to speak with me about my "concerns," I nervously but assertively told her "no" to the increased Prograf dose and reviewed all of the reasons that I have listed above, emphasizing the fact that Elise was very ill when the prograf level was drawn on Friday night, so it could be skewed.  Also, I pointed out, her liver panel was perfect, so unless she could provide me with a significant risk to holding off on increasing the Prograf, I wasn't going to allow it.  I said that I felt there should only be ONE doctor on ONE team adjusting a medication as serious as Prograf.  There were too many hands in the cookie jar. My "fight or flight" response was kicking in.  In a bit of a dry tone, she indicated that she understood and that she or the fellow would be back later if anything else came to light that I might want to consider. Well, I was confident in standing my ground, but at the same time, I was still very anxious, to put it mildly.  I emailed Dr. Fishman.  There was no way to know whether he would receive my email, but I suspect he receives email messages on his smart phone, so it was worth a shot. Right??  

About 40 minutes later, the GI fellow visited our room with a message: "Ms. Babin, we have received word from  Elise's doctor, Dr Fishman, that there are to be no changes to her Prograf at this time.  He has reviewed her labs and says that your suggestion to wait and re-check labs in the morning is fine.  No one will be adjusting her Prograf without first consulting Dr. Fishman in the morning."  THANK YOU!!  I slept much better after that, but still not very well.

So this morning, labs were drawn, and I anxiously awaited the results.  I know the lab results, including blood Prograf levels, are processed by 10:00 am, so when the team had not rounded by 10:20 am, I asked the nurse if I could view the labs on her computer.  BAM! Prograf level perfect at 2.6!!  BAM! Liver panel great and essentially unchanged. When the GI team rounded, they validated my instincts and understanding of the treatment plan for Elise and stated that after speaking with Dr. Fishman, everything looks great, he is happy with all of her levels, and there will not be a change to the Prograf.  Also, we were being DISCHARGED to follow up w/ outpatient labs in 1 week. SUCH a great feeling to know that I advocated well for my baby girl!  On my way home from the hospital this evening, Elise's pediatrician called me on my cell phone to check on Elise.  She was thrilled to hear to good news, and doctors would really be fortunate to have more mothers as knowledgeable about their child's  condition and treatment.

So after approximately 48 hours in the hospital, we are back home.  Elise is healthy, and we are feeling quite blessed and grateful once again.

In other news, LifeGift will be holding a Candle Light ceremony later this month in honor of organ donors and donor families.  I have been asked to speak at the ceremony on behalf of recipient families. I am so honored and blessed with this opportunity to pay tribute to Julia, her family, and all organ donors. Elise's donor angel's sister, Holly, will be speaking at the same ceremony on behalf of the donor families, making it even more special!!  The donor families and others in attendance will have the unique opportunity to see "both sides" of the story!  I am very excited, and of course, I will keep you all posted.

BUMPS vs SPIKES

This morning, I brought Elise for her scheduled repeat lab work at Texas Children's Hospital, which was ordered due to her slightly elevated EBV (Ebstein-Barr Virus) level last week.  EBV was 2295 last week; ideally, EBV should be 0.  Anyway, labs were drawn this morning without incident, and we were back home in no time to begin the wait for results. 

As soon as I began texting my "liver mom" friends to find out whether they had heard from our transplant coordinator, as I was growing more and more anxious, our coordinator called. She asked, "Is Elise sick right now?" The dreaded question. That particular question from a transplant coordinator or liver doc can only mean one thing: abnormal/ elevated liver enzymes. My voice may have squeaked, as I responded, "No." I added, however, that I have been sick, so maybe whatever results she was about to report could related to Elise trying to fight off my cold virus; maybe she's just not yet symptomatic. Sarah agreed...."Definitely, that could be it." She went on to report that Elise's AST and ALT were elevated compared to last week, and that Dr. Fishman has ordered her anti-rejection medication-- Prograf-- dosage to be cut to 0.5 mL (0.25 mg) twice daily rather than 1 mL (0.5 mg) twice daily. Initially, I did not understand why we would lower her Prograf when her liver enzymes are already elevated, but Sarah anticipated my question and explained that Elise's Prograf level was 4.3, which is a little higher than their goal range of 2-3. It is important to keep her Prograf level low in order to keep her EBV level under control. So, basically, we are decreasing her immunosuppression to allow her body to fight off EBV as well as any cold virus she might have.  Sarah informed me that we need to repeat labs again next Thursday 10/17/13, but she said, "We're not worried, okay? Okay.

Lab results:  AST 62 (up from 52),   ALT 68 (up from 49), GGT 20

So I returned to my work for about 5 minutes before pulling out my notebook and analyzing her trend in labs line by line. I called Sarah, telling her that I needed a little further clarification. Specifically, I asked, "I know you said you all are not worried about Elise's current numbers, but how much wiggle room do we have? Her ALT spiked 19 pts, and Dr. Shepherd told me that a spike in ALT/GGT could mean rejection!" Sarah responded, "Elise's lab results reflect a BUMP, not a SPIKE!" Okay. So then I asked more questions, referencing the last time her labs "spiked." Again, Sarah corrected me. She said, "Elise's liver enzymes have never "SPIKED;" she has only had little, tiny "BUMPS" along the way since transplant.  A SPIKE would be an AST/ALT range in the high 100's or 200's. I told her that his additional information makes me feel so much better...that all I need is a little criteria for worry. Sarah said, "You guys are paying the doctors a lot of money to worry; let them do the worrying when they need to, and I'll tell you straight up when they are worrying." So I agreed to "pass the ball" and let Sarah serve, but I'm still the team captain.

So there's my lesson on the difference between a BUMP and a SPIKE.  I never was any good at volleyball, or any sport for that matter.

I realize that this update is heavy in the way of medical material and jargon which might mean very little to many of you, so I apologize for that; I did try to explain wherever possible. And for those that want all the details, there you have it. To summarize, Elise's lab results today were not exactly what I hoped for, but they were not unexpected considering Elise's known EBV issues, and her treatment team is not overly concerned; however, we are repeating labs next week to further assess the trend and make any medication adjustments necessary. 

We pray that Elise's liver continues to be happy and stable. I have all the faith in the world that our "coaches" Drs Fishman and Shepherd have lots of plays in their playbook to keep us on the winning side.  Most importantly though, I trust in God, and I envision him wrapping his arms around Elise's liver and binding any irritations or antibodies that threaten her.

We're GOOD; we're BLESSED; we're GRATEFUL; we're 6 MONTHS post-transplant!

Elise's had liver clinic yesterday at TCH, and things are looking GREAT!!  She is now 26 lb 2 oz and 33 inches (2 ft, 9 in) tall!! She's on a normal toddler diet w/ whole milk and a regular children's multivitimin....as in regular over-the-counter children's vitamins!!  Anyway, Dr. Fishman and her transplant coordinator walked into her exam room w/ such huge grins on their faces that my apprehension was eased, and I didn't even ask for exact numbers until approximately five minutes into the visit! You may not understand, but that is HUGE for me.  I'm usually standing in the hall trying to get someone to show me her labs.  Anyway, her liver panel is essentially the same as last month and fabulous, her blood counts are all normal, and her Prograf (anti-rejection) level is perfect, so no change in dosage!  Next labs scheduled for October 29, and next "liver clinic" is scheduled for December 4!

Current results.... AST 52, ALT 49, GGT 18, tacro level 3.6 

Last month results.... AST 54, ALT 49, GGT 18, tacro level 3.2

Now, technically her AST and ALT are still very slightly elevated compared to the "normal" ranges, but her doctors explain that this is due to the fact that they are running her prograf level extremely low for 6 months post-transplant, which is necessary in order to keep her EBV level under control.  In previous posts, I've discussed that her EBV (Ebstein-Barr Virus) load has spiked at times with higher levels of Prograf, and high EBV levels left uncontrolled could lead to post-transplant lymproliferative disorder (PTLD), or cancer. But hear me when I say that her EBV level has been well-controlled for several months now, and there is no discussion at all of PTLD right now. I feel confident that there never will be, because her team is on it!  

In other news, Elise gets to drop the Ursodiol med which officially leaves her on ONLY 1 MED- the Prograf!!  This is the first time in her entire life that she has only required 1 routine med/day. Granted, this particular med is paramount to life support for the foreseeable future.  BUT, I'll take that! 

We discussed her upcoming ENT surgery to have ear tubes placed which is scheduled for Oct 7 at TCH. Her liver doc says that he has consulted w/ the ENT/surgeon, and liver team will take a quick peak at her in post-op before she is discharged...but they assure me that the procedure will be quick, and she will be out of there within a couple of hours.  This will not be turning into a big complicated production.  

Now, I was hoping that ENT would be our last stop.  I mean, in the past 23 months she's now been seen by pediatricians, neonatologists, gastroenterologists and hepatologists, surgeons, anesthesiologists, a cardiologist, endocrinologist, urologist, radiologist, psychologist, immunologist, dentist, ophthalmologist, and allergist. BUT, we'll be adding pulmonologist to that list.  During liver clinic yesterday, her liver doctor asked that we head over to visit her pediatrician regarding her chronic wheezing and raspy breathing patterns that they have noticed the past few months at clinic. I've also mentioned that she sometimes gets into coughing spells with no other symptoms. We've been advised previously that she is at high risk of developing respiratory/ pulmonary problems for several reasons including but not limited to the fact that she was born 5 weeks premature with a pneumonia and a collapsed lung, she has been intubated for surgeries/procedures 6 times, her daddy has Asthma and seasonal allergies, and she's recently been diagnosed with a food allergy to eggs. Both her liver doctors and her pediatrician feel strongly that she is showing all the signs and symptoms of having developed Asthma, so she now has two prescribed inhalers and a referral to the pulmonologist for further recommendations and collaboration w/ her liver/transplant team. 

All in all though, we're GOOD! And we're GRATEFUL! We are so very blessed to have the amazing team at Texas Children's Hospital, even if her team does now include practically every specialty in-house there. Bottom line is they are recognizing and effectively managing all of her needs, and are keeping Elise happy and healthy!

If you recall, at the beginning of our journey, we were told "Elise will need a liver transplant before age 2 in order to survive." I simply can not believe that Elise's 2nd birthday is less than 1 month away, her liver transplant is 6 months behind us, and she is living life and thriving.  She's enjoying preschool every day w/ her brother and her friends, she's been swimming and LOVES it, she gets to play at parks and indoor playlands, she's outgrowing her clothes faster than I can buy them...now wearing 2T PJs and size 5 shoes, she's talking more and more every day, and she's potty-training!! 

Thank you all for following Elise's journey. Please pray, as always, for our "donor angel" Julia's family. Julia's brother is getting married this weekend, and she was planning to be dancing toThriller at the wedding.  Instead, she became a Hero, an organ donor, and in doing so, she saved my baby girl's life. The pain of her absence is not something I can even pretend to know, but I do know that I will honor her and remember her every day for the rest of my life.

God Bless Julia and organ donors everywhere. 

It's Never Too Late to Be What You Might Have Been"

In my last post, I believe I introduced you to Elise's "donor angel," Julia. Last month, we connected with her family through email and social networking and learned that she was 20 years old, a loving mom to a sweet little girl; she is very much loved and missed by her family. Julia was a nursing student here in Houston, focused on pediatric nursing; she would have undoubtedly helped to save many lives in her career. As I learned more and more about Julia, I created a photo book telling the story of one of the lives she did save--Elise's life--by becoming an organ donor. I ended the inscription inside the cover with the words, "It's never too late to be what you might have been." Julia's sister shared with me that she used this quote in her tribute to Julia at the memorial service.  Honestly, I can not imagine any words more suitable for our donor angel. 

So, this past Saturday, August 10, 2013, I was able to deliver this photo book in person, as we were blessed and privileged to meet Julia's family.

LifeGift, our local organ procurement organization, coordinated an amazing reunion on Saturday for us and Julia's family. Without rehashing all the detail, suffice it to say that there was a wide array of emotions in that room. We visited with Julia's mother, Darlene; her father, Greg; her sister, Holly; her daughter, Ava; her niece, Layla; and her uncle, Joby. Julia's mother presented Elise with several very special gifts on behalf of their family, and she also gave David and me a gift of sentimental items and pictures. Several members of the LifeGift staff were present to support us, and they led a moment of silence for Julia before we left.  KRIV Fox 26 was there to capture the moment of our "reunion," and the segment they produced for the 9:00 pm news that night was a beautiful  tribute to Julia as well as a testament to the importance of organ donation.

Click the link below to watch the Fox 26 news segment featuring our LifeGift reunion:

http://www.myfoxhouston.com/video?clipId=9190015&autostart=true

We certainly intend to stay in close contact with Julia's family. As I said to them on Saturday, we consider them part of our family now, and we want them to be part of Elise's life as she grows up. Julia's daughter and niece are not much older than Elise and her brother Ethan, and I hope that our families will create many more memories together in the future.  

"It's never too late to be what you might have been." So true. These words can apply to anyone. Be a Hero; Be an Organ Donor. It's very simple to register. Please remember to discuss your intentions with your family though, as this will relieve them of some burden while helping to ensure that your wishes are carried out and lives are saved.

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