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

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!!  

Rockin' Liverland

We've known since Day 1 that Elise is a little ROCK STAR!  But it has never been more evident than it is right now. Truly, Elise is rockin' liverland in every way!  Her liver panel is perfect, her liver looks great on ultrasound, she is gaining weight, thriving, and even beginning to throw some tantrums!  While tantrums are not pleasant, I remember a time when I was not sure we would see Elise go through the "terrible twos."  Thankfully, the "terrible twos" are in full swing now, and those ominous thoughts are fading from my mind. 

Okay, so back up a couple of weeks.  Two weeks ago, Elise had a set of labs drawn between clinic appointments.  Her liver panel was perfect; there seemed to be no worries; however, last week, on our way to Louisiana, Elise's transplant coordinator called me to tell me that her EBV level (which takes several days to process) was a bit high. "But don't worry.." she said.  HA!  I wasn't worrying; I was having a small coronary. An elevation in Ebstein-Barr Virus (EBV) level needs to be closely monitored, and intervention should take place as soon as possible,as uncontrolled EBV levels can lead to a very serious complication called Post-Transplant Lymphoproliferative Disorder (PTLD), which can turn into a full-blown malignancy, lymphoma.  So, like I said, early intervention is critical, and as always, our liver/transplant team jumped on it immediately. After consulting with her liver doctor, our transplant coordinator instructed me to decrease Elise's Prograf (anti-rejection) from 3 mL twice/day to 2 mL twice/day. Based on all the research I had previously done related to EBV levels and PTLD, I know that this is the most appropriate initIal course of action. I was just really concerned that the lower Prograf dosage would upset her new liver, and we might face rejection issues.  I asked, "Should we have labs drawn while we're in Louisiana...you know, just to check in on her liver?"  Per her doctor, "NO! She has a perfect new liver and it will be fine."  If you can call her team at TCH anything, you can call them "confident." And "amazing." 

So this all brings us to where we are...TODAY!  Today, June 19, was Elise's 3-month post-transplant liver clinic appointment.  Her regular liver doctor was unavailable, and we couldn't push the appointment out any further, so we were seen by our liver center director, Dr. Shepherd.  I've talked about Dr. Shepherd previously-- he is WONDERFUL, and he is a real expert in the field of Biliary Atresia and pediatric liver transplant.  He has worked in hospitals all around the world including several of the top liver transplant centers in the United States. Anyway, I just love that he is never short on words.  As you might imagine, I like doctors to talk until I've had enough, and then talk some more.  THAT, my friends, is exactly what he does.  He's been through this so many times, that he actually foresees my questions and answers them in a way that demands my trust.  He talked to us for about 45 minutes today, and I LOVED the sound of every word that escaped his mouth.  He walked in with a huge grin on his face and said, "Her numbers look perfect...all of them...and not just her liver panel....ALL of her labs." He went on to explain that Elise's new liver has obviously tolerated the lower Prograf dosage very well, which is great! He informed us that it is now time to begin carrying out their plan to wean Elise off most of her meds, leaving just a small dose of Prograf.  And eventually, he was sure to add, "Elise will be an ideal candidate to wean off ALL of her meds--including the Prograf-- completely, though that last move will be at least 3 years down the road. 

So, the PLAN is as follows:  Elise's steroid dose was cut in half as of today.  Over the next 10 days, we will be phasing out 4 meds completely-- the steroid Prednisolone, the antacid Prevacid, the ant-viral drug Valcyte, and the anti-fungal med Nystatin.  She will remain on Prograf 2 mL twice/day, Ursodiol 2.5 mL twice/day, and Bactrim 13 mL three times/week. She now weighs 23 lb 15 oz and is 31.5 in long, placing her in the 50th% percentile for weight and the 15th% percentile for height.  She no longer needs quite the amount of calories that she has been taking in, so she is to begin weaning off the Pediasure formula and transitioning to whole milk!!  MUSIC TO MY EARS!!!  

We will go back to TCH for repeat labs in 2 weeks, and assuming everything still looks great and there are no more nasty EBV issues, next liver clinic will be in 6 weeks, on July 31. 

Based on the recommendation of Elise's liver/transplant team at TCH, she returned to her normal daily routine at daycare this week. Dr. Shepherd explained today that she is not more at risk of catching normal illnesses, but it might just take her a little longer to get over illnesses that she does catch...and despite our best efforts...she WILL get sick sometimes. We should expect this and know that her team will monitor her closely and manage any issues that come up. Dr. Shepherd emphasized the importance of not keeping Elise in a bubble.  He said, "If our transplant kids needed isolation, that's where she'd be, in isolation."  Elise needs to go out and live life like any other kid, with just a few special precautions in place." 

For those interested, here's Elise's liver panel as of TODAY (***Albumin-higher is better;   all others- lower is better***) 

      AST 38 ALT 34, GGT 14, direct bili 0.0, Albumin 4.9

Just to compare,  here's Elise's "old liver" panel from March 2013:

      AST 129, ALT 111, GGT 536, direct bili 0.0, Albumin 2.9

As always, thank you all so much for following Elise's journey in "Liverland." We love you all and appreciate all the prayers and support so very much!!  

"Normal Kid Stuff"

You know...we could focus on the length of time since my last post....but let's not do that.  Instead, I'd prefer to focus on "normal kid stuff" like allergies, glasses, and ear infections.  Over the past few weeks, these are the issues that are occupying my mind... and let me tell you...I'll take these things over liver disease stuff like feeding tubes, PICC lines, and hemoccults any day!  

So, a couple of weeks ago, I was feeding Elise scrambled eggs for breakfast.  She has eaten eggs with no problem many times in the past; however, this time she immediately experienced an allergic reaction; her face and neck broke out in hives, and she started with a horrible coughing spell, runny nose, and itching eyes.  I thought she was going to scratch her eyes out.  Benadryl...quick....but wait, what dose??  I should have been prepared with this info beforehand, but Elise never had food allergies in the past.  I did the best I could...I gave her 3/4 of Ethan's dose. I later found out... it turns out...I wasn't too far off.  ANYWAY, we had liver clinic the next day at Texas Children's, so needless to say, this issue became paramount on my list of topics for discussion.  Well, right behind liver panel results.  

Okay, so on to results of our last liver clinic appt.... drum roll please....FANTASTIC labs.  For any of you interested in the nitty gritty, here's her numbers:

AST 48, ALT 44, GGT 19, conjugated bili 0.0,  Albumin 4.4, platelets 237

Her weight is 23 lb 7 oz, and she is 31 inches in height.  That means she's gained almost 2 lb and grown over 1 inch since transplant!!  Yay!!  

Also, at this liver clinic appt, I handed a letter to our transplant coordinator.  It is a letter to our "donor family." Because of confidentiality laws, we were given no information at all regarding the age, sex, or location of Elise's "donor angel." Regardless of these details, we want to the family to know about the gift they have given not only to Elise, but to our whole family. Elise is living life and experiencing "normal kid stuff" because they made the decision to donate their loved one's organs during the worst moments of their life.  We hope that they will accept the letter and respond, but it will be totally up to them. In any case, we will keep this family in our thoughts and prayers for as long as we live.  

Next, two weeks ago, was our appt with the Allergist/Immunologist at TCH.  After some disagreement over whether or not the allergy testing should take place that day, this momma made the decision to move forward w/ the allergy testing that day with the understanding that this testing may need to be repeated if results were negative.  Their argument was that they preferably like to test at least 1 month following an allergic reaction.  Elise's liver doc had given me specific instructions not to allow them to say they can't do the testing that day, and I had no intention of leaving the office without answers, so the testing was done.  Elise is in fact allergic to eggs.  She did not react to baked egg though...only to raw eggs.  So, no scrambled or undercooked eggs for her.  According to the liver/ transplant team, transplant patients sometimes suddenly develop allergies either due to increased sensitivity to allergens due to immunosuppresent medication or by taking on the allergies of the donor.  Interesting, right?  This could make for some fun surprises at any time.  Thankfully, Elise now has an EpiPen on hand to be injected if she should ever experience an anaphylactic reaction. 

Last week, on May 15, we visited the ophthalmology clinic at TCH.  We have noticed that Elise's left eye sometimes turns in.  It was causing me additional anxiety, thinking it might be something that needs immediate attention in order to possibly be corrected. So, anyway, they dilated her eyes, and she underwent a complete eye exam.  Although I basically knew there was an "issue," I was still shocked with the results.  We were told that Elise has "Accomodative Esotropia," basically meaning one eye turns inward in an effort to focus and accomodate for severe far-sightedness. The recommendation?  Elise was prescribed glasses and requested to return in 3 months to follow up.  Her prescription is +5 in both eyes, which is even worse than my prescription was before I got LASIK a few years ago. The doctor said that the glasses should correct her vision and the eye turning issue, but if not, she may face eye muscle surgery and/or patching in order to fully correct the problem and avoid amblyopia "lazy eye." I'll spare you all the details of my 24- hour "meltdown" regarding Elise's needing glasses. Suffice it to say that it was something like "the straw that broke the camel's back." Anyway, I regained my composure, and a few days ago, I went off to Insight Vision to pick out some cute little toddler frames for our sweet girl, compliments of Grammie!!  

Now yesterday, Elise's clear runny nose turned into a green runny nose.  I really do try to go full days--even several days in a row sometimes--without calling the our transplant coordinator.  BUT, per the instructions given to us by the transplant team, I called.  One of my "liver mom" friends basically told me verbatim what the coordinator would say, which was to take her to the pediatrician and probably get an antibiotic.  Which is exactly what I did.  According to Dr. Pocsik, Elise has a double ear infection. She started the antibiotic Suprax for 10 days. Yes, it's another problem, but YAY for "normal kid stuff!" In regards to these types of infections or other acute illness, however, it is important to address it promptly with antibiotics to avoid the immune system becoming really angry and triggered which could possibly lead to rejecting the new liver.  

All in all, Elise is doing GREAT!  She is truly rockin' "liverland" 2 months after her liver transplant.  She is walking, just about talking, growing, gaining weight, and showing off a "normal" tummy! She no longer has fluid in her belly or portal hypertension, and her labs are probably better than mine at this point!  I could not be happier; we are truly blessed.

PS:  As of today, though our partnership with COTA, we have raised $33,844, which is over 55% of our goal!  This absolutely floors me, and I don't think I can adequately express my gratitude to all of you who have followed Elise's journey and made contributions in honor of Elise.  Thank you so much.  Next month, June 2013, will mark our 1-yr anniversary of working with COTA, which means that COTA will match 10% of total funds raised by June 1, 2013!!  There is still time to reach our goal!!  We'd appreciate if you'd share this with all you know to maximize our reach and make even greater progress in off-setting the uncovered costs of transplant!!

Settling in on the "Other Side"

Yikes....again, I apologize for allowing so much time to pass without an update. If it's any comfort, no news is good news!!  Tomorrow will mark 3 weeks that Elise has her happy new liver!!  And a happy liver means a happy momma and happy new life for our family!!

Seriously, Elise's response to her life-saving liver transplant has been amazing!   She recovered from surgery and was discharged home 9 days following the operation. She is currently on 6 different meds and takes 14 doses of meds every day, but it doesn't spoil her mood.  She is smiling from the time she wakes up to the time she swallows her 9 pm dose of Prograf and goes to bed.  She is eating, gaining weight, and preparing to transition from her specialized prescription formula to regular milk....REGULAR MILK....that may seem insignificant, but trust me, it's HUGE!  

Since her discharge from the hospital, Elise has of course been monitored very closely by the liver/transplant team at Texas Children's. She has been having blood work done approx 3 times/week, and she has had two full liver clinic visits.  Her primary hepatologist Dr. Fishman, the liver center director Dr. Shepherd, and her surgeon Dr. Goss all agree that the outcome Elise is experiencing is the best anyone could have hoped for. There have been no surgical complications, and her labs are continuing to improve with every draw. For anyone interested in the details of her labs, here are her current numbers: AST 64, ALT 78, GGT 73, Albumin 4.2, direct Bili 0.0, INR 1.1, platelets 270, HGB 10.0. Last week, we were even told that Elise will likely be a good candidate to participate in an ongoing research study where she could possibly be weaned off of the anti-rejection medications.  It will be a couple of years before that is an option, however. 

During times of high anxiety, I know I may have moaned and groaned...I may have complained and challenged ideas and decisions related to her treatment. I don't regret any question I have ever asked or any complaint I have ever made. I did what any other "momma bear" would do in my position.  And make no mistake.... the "fight or flight" response will turn even the most shy and passive of mommies into a "momma bear." What I want everyone to know, though, is that Elise's treatment at Texas Children's Hospital has been superb. The attending physicians gave us a definitive diagnosis, developed a treatment plan, and have executed that treatment plan without fail. Indeed, their decisions and "moves" have been carefully orchestrated every step of the way.  As a result, Elise received a successful liver transplant and has a new and wonderful prognosis; Elise can now live a long and happy life.  

Although Elise has received her "gift of life" and has a new and healthy liver, we know the fight is not over; rather, we have won the first battle and entered into another one: "the other side," as it is referred to in "Liverland." Elise will now always be a transplant patient. She will always be at risk of rejection, and the anti-rejection meds place her at heightened risk of other problems such as hypertension, diabetes, and cancer.  According to Elise's doctors though, these  potential complications can and will be effectively treated and resolved if they should ever become a problem for us.  And I am 100% confident that this is true; her doctors have always been correct in such statements. What peace I feel in having full faith in God and in Elise's treatment team.

Thank you to every single one of you who have prayed for Elise and sent positive thoughts and well wishes!  The support means so very much to us.  GO TEAM ELISE!!  

THE CALL…at the Zoo!!

^{Since I'm running a little behind on this post, many of you probably already know this, but Elise received THE CALL on Saturday 3/23/13.  When we left home that morning, it was to go to the zoo... we were not exactly expecting that we would bring Elise home from the zoo with a new liver!!  Actually, I shouldn't say that; call it mother's intuition, but I put the hospital/ transplant bag in the van when we left home... "just in case."   So like I said, we were at the zoo when our transplant coordinator called to tell us that they had an offer for a liver which appeared to be a perfect match for our sweet Elise. Obviously, we were overwhelmed with emotion...mainly anxiety... and we left the zoo in a hurry to drive three blocks to  Texas Children's Hospital.} 

^{Upon arriving at the hospital, they expedited our admission through the ER, and we were led straight to the room which was awaiting us on the GI/liver floor.  The nursing staff collected lots of blood for lab work, and a chest x-ray was done to rule out any illnesses which would preclude transplant.  She was of course cleared for surgery fairly quickly; however, we still faced the wait for the surgeons to harvest the donor liver, transport it back to TCH, and examine it to ensure that it was indeed a perfect match and size for Elise and that it was in good condition.  Surgery was tentatively scheduled for 6 pm. And so, we waited.}

^{At 7:15 pm, the OR nurse and anesthesiologist came to take Elise to the OR.  It was A GO!!  I then handed our baby girl over to the transplant surgery team for the liver transplant, calling upon every defense mechanism I could to avoid the immense panic related to the lengthy list of potential life-threatening complications. As the OR nurse took Elise from me, I also handed her my cell phone number and a disposable camera as well as instructions to take a picture of Elise's old liver once it was removed.  She said she would do whatever she could to get that picture for me.  I just felt that I needed to see the organ that has caused such a crisis in our lives.}

^{Shortly after 9:00 pm, I received the first update from the OR: "Dr. Goss has made the first incision; the operation itself has begun."  I said to David, "I guess now there's really no turning back."  David responded, "When they told us she had BA and that her liver was cirrhotic, there was no turning back;  when she had that bleed 2 weeks ago, there was definitely no turning back.  " Of course he was exactly right.  At 10:35 pm, we received the next update: "the old liver is out, and the new liver is going in..."  Wow.  So, that was probably the point at which things started to hit me pretty hard.  This surgeon had just taken out one Elise's most vital organs, and if this new liver didn't turn out to work, we could lose her. It was then not until 1:09 pm that we were informed that the surgeon was closing the incision and the operation would soon be over. Elise would be taken straight to the pediatric intensive care unit, where we would finally be reunited with her about an hour after surgery.  While waiting to see Elise, her surgeon, Dr. Goss, came out to the waiting area and spoke with us. He informed us that the surgery went very well with no significant complications.  I thanked him, and he said, "This is what we do."}

^{Yesterday, on Sunday 3/24/13, at about 2:30 am, we saw Elise post-op for the first time post-op.  She looked so little and helpless, although in reality, she was about 2-3 times her normal size as a result of fluid retention from surgery.  She was intubated on a ventilator, meaning there was a tube inserted in her throat to breathe for her until she could do so on her own. She was also covered in monitors and had multiple peripheral IV lines as well as an arterial line which measured her blood pressure internally, a central line placed in her neck, a NG feeding tube, and a foley catheter. While it initially hurt me to see her like this, that feeling quickly began turning to triumph as Elise began to remind us who she was under that puffy skin.}

^{Just 7 hours after coming out of surgery, Elise was obviously taking her own breaths, so the decision was made to remove the ventilator (breathing tube).  The ventilator was taken away, and the rest of the day went fairly well without incident.  Then this morning, less than 36 hours post-op, the liver and transplant teams rounded and made some additional surprising and exciting decisions.  As the surgeon, Dr. Goss, walked into the room, Elise was screaming.  Like music to my ears, Dr. Goss said, "Would someone get this kid a bottle!? Who has a bottle?!  Let's let her eat...I bet that will fix her all up.  The nurse quickly provided a small bottle which Elise latched onto while Dr. Goss continued his orders: "OK, she looks great...lets get rid of all this "stuff" and get her to the floor. To clarify, by "stuff" he apparently meant the foley catheter, the peripheral IVs, the NG feeding tube, oxygen, and heart monitor.  I was stunned...but ecstatic! I asked whether he meant that she was really going to go to the regular floor today....and he said, "Yeah, why not! She's a rock star!"  I reminded myself that Elise now has a perfect liver, matched and custom fit just for her by our amazing liver transplant team, led by this one Dr. Goss; HE is a rock star, in my opinion.}

^{This afternoon, since arriving on the 12th floor at TCH--the GI/liver floor--Elise has been drinking bottles of formula, and late this afternoon, she wet her diaper for the first time!!  For a short while, she gave us a little scare though, as she approached six hours without wetting any diapers at all. There was a short sighting of "momma bear" during the time that I felt there was a serious problem, and my concerns were not being addressed.  Her catheter was removed at 10:00 am.  Around 4:00 pm, she had still not wet any diapers at all, and she began refusing bottles and oral meds and appeared highly agitated. Her swelling appeared worse, and her abdomen was more distended. I told the nurse, who called the resident, who called the fellow, who said he was busy and asked her to call the resident again.  STOP. WHAT?  I was livid when I heard that the fellow was actually requesting the person one level behind him make a decision after that said person had just escalated the issue to him!!   I went out in the hall and exclaimed, "Does that even make any sense???  You can go ahead and make that resident's day, but not at Elise's expense.  I want the attending physician to see her within the next 10 minutes, or I am activating the RRT (Rapid Response Team), which is basically a patient/ family-powered "code" designed to alert medical staff and administration when a family feels the patient is getting worse and there is no action plan in place.  Well, like magic, the attending MD came in and quickly ordered a "in and out catheter" to drain and measure urine.  As soon as the word "catheter" was mentioned, Elise soaked her diaper!!!   Potty training she go well now that I know the magic word.}

^{Elise is now resting comfortably.  She is receiving pain meds as needed as well as multiple other meds, some of which she will be on indefinitely. Her primary attending hepatologist, Dr. Fishman, came to visit her this afternoon, although he is not on hospital service this week. He's obviously very pleased her her progress and expects that she could conceivable discharge home by this Friday 3/29/13, barring any major complications of course!  What a miracle have received this Holy Week, and the blessings seem to continue moment after moment. This Easter we are so deeply grateful for the unselfish decision one family made in their grief and darkest moments, to donate or donor angel's organs, thereby giving Elise "new life"-- her "gift of life!"}

^{Please always keep our donor angel and his or her family in your prayers!!}

^{Thank you all for love and support you all have shown to Elise and our family! We are overwhelmed and appreciate it all so much!!}