Elise's 1st Transplantiversary

We celebrated Elise's 1st Transplantiversary, March 23, at our house with our amazing friends and family. Thank you to everyone who came out to celebrate with us. And most of all, thank God for Elise's donor angel, Julia, and all organ donors, who make days like this possible.

1 YEAR ANNUAL Transplant Review Clinic

Can you believe this week makes 1 year since Elise received her liver transplant?  It seems surreal to me.  I vividly remember this time last year. I was living minute by minute, day by day....and I could not imagine that on March 19 of 2014 we would be at our 1 YEAR ANNUAL transplant review clinic. But here we are.

Elise and I spent most of the day today at Texas Children's Hospital, and I must say it has been a wonderful day! We started out having her labs drawn at 7:30 am.  We then went to the West Tower 12th floor inpatient unit and visited with a new BA family--yes, we have a new baby boy in our "liver family," who is 5 months old and awaiting a liver transplant. It seems like only yesterday, WE were the new BA family at TCH. Anyway, the emotions they are feeling right now are all too familiar, and it just tugs at my heart. Anyway, Elise and I spent about an hour talking to them and sharing our experience and hope.  

At 9:30 am, we arrived to clinic. We first saw our transplant coordinator, who reviewed all of Elise's lab results with me. She walked in the door saying "Her numbers look great!" Which immediately put me at ease. In fact, her "numbers" are some of the best she's ever had! 

AST 54, ALT 56, GGT 24, conjugated bili 0.0, total bili 0.2, Albumin 4.8

Her CBC (complete blood count) and CMP (complete metabolic profile) are normal!  Her Prograf level is 4.4, which is perfect (goal range 3-5.) 

Dr. Fishman came in saying "She looks FANTASTIC! And BIG! What's she been eating, besides pennies?" Elise was seen in the ER this past Saturday after swallowing a penny. He was happy to hear that I "confirmed" the penny came out on its own in her diaper the next day. "Better you than me," he said. Haha. Apparently, Dr. Fishman routinely fishes foreign objects out of toddlers via endoscope. So yes, better it was me than him.

Anyway...moving on.  Dr. Fishman had a medical student with him, so we reviewed Elise's entire history from age 6 weeks, when Elise was first diagnosed with Biliary Atresia.  It was nice to hear Dr. Fishman's summary, although I'm quite sure I could not begin to summarize our experience in 3 minutes. Dr. Fishman then completed his exam and reviewed her current labs again with me. He and our coordinator emphasized the importance of this milestone-- being 1 year post transplant. They indicate that the worst should be behind us now, although there will always be the possibility of bumps in the road. 

Near the end of our clinic appt, our dietician, Stacey, came in to review Elise's current "growth trends" and "dietary needs." Elise's current weight is 29 lb 15.4 ounces (75th percentile,) and her height is 2'11" (50th percentile.) Stacey advised us to switch Elise over to skim milk rather than whole milk, no more than 20-24 oz. per day. She needs to have a well balanced diet high in protein and veggies and low in sugar and fat, with fruit for snacks.  These recommendations are meant to keep her new liver nice and healthy and functioning at its highest potential. 

After clinic, Elise had her LAST pentamidine treatment. She was required to take inhaled pentamidine treatments once/month for 1 year post transplant to prevent PCP, a very dangerous type of pneumonia. She never really fought the treatments, but it's nice to be relieved of them now.

We ended our day at TCH by meeting up with our very good liver friends, Tara and Abby.  Elise and I waited with them for Abby's labs, which gave Tara and I lots of time to chat and catch up while Elise and Abby built a lego choo choo train. Then we all went down to the food court for lunch. Dr. Fishman and Stacey would be proud to know that Elise ate grilled chicken and fruit with no complaints! 

AND NOW....we are officially free to celebrate Elise's 1st Transplantiversary this Sunday, March 23. We've planned a special gathering of family and friends. We'll have a balloon release in honor of Elise's donor, Julia, and organ donors everywhere. As we know, "Without the organ donor, there is no transplant, no hope, no gift of life." 

Thank you all for your continued prayers and support and for continuing to follow Elise's journey.

Bombshell

Things change so quickly around here in Liverland. As a result, I have been putting off writing this post for quite some time.  I do want to keep you all up to date though, so here it goes.

Last month, on January 17, I received a phone call from our transplant coordinator that rocked my world. You see, I was under the impression that the biopsy which Elise underwent in December was the "ultimate" test with definitive results. Elise was taking her oral steroid medication for what doctors assumed was acute, mild rejection. David and I reviewed the biopsy results with her doctor, and all evidence did point to rejection, so I had accepted this as matter of fact, and we were dealing with it.  So, you can imagine, when our coordinator called with the following information, my brain froze; it was like "does-- not-  compute." She said, "Erin, I have good news and not-so-good news.... we know why Elise's labs have been so elevated, and it's NOT REJECTION....  the other thing is that she needs to be admitted again...tonight...to start IV Gancyclovir for the treatment of cytomegalovirus (CMV). After about 15 minutes of Sarah repeating herself and explaining her directions, I understood that she would call back when a room on the transplant floor was ready, and we would then go over to TCH for Elise to be admitted.  

Elise was admitted on that Friday night, the night before David's birthday, and we spent the next 5 days in the hospital. True to our fashion, we were admitted on a weeked, when liver team is not on service in the hospital. Thankfully, Elise's primary hepatologist documented admitting orders as well as a very specific treatment plan. Since we were no longer treating for rejection, the steroids were immediately discontinued, and her anti-rejection medication was decreased to the previous dosage which had done well with her for almost 9 months prior to this whole episode.  Elise was started on IV Gancyclovir (anti-viral) medication twice daily. Prior to discharge, Elise had a PICC (peripherally inserted central catheter) placed, and we agreed to a plan to continue IV Gancyclovir at home for 4-6 weeks to ensure that the virus is completely eradicated.

Elise has been home now for the last couple of weeks, and the improvement in her labs is astounding!  

Her AST has dropped from 250, to 78, to 53.

Her ALT has dropped from 287, to 104, to 52.

Her GGT has dropped from 181, to 61, to 27. 

NEXT MONTH will be Elise's 1st annual transplant review clinic.  I can not believe it's almost been a year since Elise received her gift. The improved quality of life she enjoys now is just amazing. I think about where we were at this time last year--and where we might be now had she not received her gift of life when she did-- and I just cry. 

As we gratefully anticipate Elise's 1st "transplantiversary," we know very well that there is another family--Julia's family-- still grieving. Every single solitary day, this weighs heavily on my mind. I hope that Elise will always be a living testament of Julia's "gift" though. With this in mind, "TEAM ELISE will be participating in Liver Walk Houston 2014 on April 26, 2014.  Elise is also registered for the Transplant Games of America, which Houston is hosting this summer. 

Elephant in the Living Room

Those of you who follow my blog and Facebook page may have noticed that I have been MIA from the blog lately, and I have neglected to address the "elephant in the living room." Call it a busy schedule...or denial....or exhaustion....or a little of all of the above. I think I have done a decent job of holding everything together over the past month, but the thought of sitting down to write about it did not appeal to me.

Today, I'm in a better place, so here it goes.

On December 19, 2013, I brought Elise for "routine labs." Typically, I wait excrutiatingly long hours following lab draws to get a call with results, but this day was different. When my phone rang with the TCH number at 9:30 a.m.-- about 15 minutes after I arrived home-- I knew something was very wrong. Our transplant coordinator said, "Erin, don't panic (yeah, right!) but please bring Elise back to the hospital right away to redraw her liver panel. She gave me "the numbers," and if I had had a chance to eat that morning, I would have probably been sick. Of course, I did bring her back, but the results were the same; these "numbers" were real. 

AST 531 (up from 64,)  ALT 417 (up from 66,)  GGT 72  (up from 17)

Elise was admitted to TCH for a liver biopsy the next morning, December 20, which confirmed  mild rejection. Of course, we received results of Elise's biopsy on a weekend, and I'm pretty sure this was the first time this resident MD ever presented results of biposy showing rejection.  She was using those vague terms that I despise such as "consistent with" and "suggests...."  I let her finish her review, and then I asked, "So, is this rejection?" She said, "It shows inflammation of the liver that is consistent with rejection." I asked, "So you will treat for rejection?" She responded, "Yes." Finally, I asked, "On a scale of 1-10, "1" being the mildest rejection, and "10" being the most severe rejection, how do you rate it. Our resident MD looked at the attending physician, a GI doctor, who said he would rate it a "4," but he suggested I discuss the results more thoroughly with the hepatologist, Dr. Fishman, on Monday.....as if I wasn't already emailing him in my head. 

Shortly after the biopsy results came in, Elise was started on high dose IV steroids while hospitalized at TCH. Thankfully, the side effects were minimal, other than a largely increased appetite. Since Elise had no physical symptoms of illness whatsoever, she and I made the best of our 3 days there.  We took walks to Starbucks and to the ice cream shop; we walked around in the gift shop and bought Elise little "treats" and "surprises" to reward her for being such a trooper; we visited the child life specialist; we read books in the library; we saw Santa Claus; we did "arts & crafts;" we played with toys in our room. Grammie & Paw visited, and so did Daddy and Ethan. Although I was terrified on the inside, I did my best not to show it or reflect that on Elise. Also, since Elise had no symptoms, I advocated for her to be left alone at night--no q 4 hour vitals, or even q 6 hr vitals. The team was very reasonable and did issue an order, "do not disturb between 9:00 pm and 5:00 am."

While Elise was in-house at TCH, our sweet little liver friend, baby Madelyn, was also inpatient...in the critical care unit....fighting complications of her liver transplant. She was briefly re-listed for a second transplant and did actually receive an offer for a new organ; however, she was too sick and therefore unable to undergo the second transplant. At each opportunity--when David was there and able to stay with Elise--I ran down to visit Madelyn and her mommy, my dear friend Amanda. We talked, we prayed, we hoped, we pleaded with God for Madelyn's miracle. In all honesty, Elise's situation was put into perspective by the  blatant direness of Madelyn's predicament. 

On December 23, 2013, after a thorough review with our hepatologist and liver team, and after Elise received her 3rd dose of IV steroids, we were discharged home....with an increased dosage of anti-rejection medication of course. 

On December 26, 2013, I had to bring Elise for repeat labs at TCH.  Normally, I would have texted our friend Amanda, to ask what kind of coffee she would like. It was always "our thing" that I would bring her a a vanilla latte or a caramel machiatto when we were there, and we would visit. But on this particular day, I just didn't want to intrude, and I was heading towards the elevator when I ran into Amanda's mom, "Coco." She hugged me, and she said she was going to go get Amanda, because she would want to see me.  Amanda came out, and the raw emotion, and primal mother instincts were evident. As we talked, she told me, "We're going to let her go today." She talked about how hard Madelyn had fought and that as her mother, she had to support her if she needed to go; she did not want Madelyn to feel that she was disappointing her.  I didn't know what to say, so I just lifted her up. A mother has to do what she has to do, and let me tell you, Amanda was never a better mother than she was on that day.  Around 3:15 pm, I received a simple text, "Madelyn smiled when she saw Jesus."  Heartbroken. That's what I felt. But when I spoke to Amanda later that evening, we talked about how Madelyn did in fact receive the "miracle" we prayed for; Madelyn is healed now and free of pain; she earned her golden angel wings and is playing with the angels. I attended her memorial service, which was beautiful. Her grandpa, "Roro," pointed out that Madelyn's life was not measured in number of days but in the number of lives she touched. How true.  At the end of the ceremony, we all released muti-colored balloons for her, and I know that she enjoyed them.  

In regards to the treatment for Elise's rejection, Dr. Fishman did not initally prescribe oral steroids for her to take at home due to her known EBV issues. Steroids are a type of immuno-suppressive, and they typically cause EBV blood levels to rise. For about 2 weeks, it appeared that Elise's labs were improving, which was wonderful. We celebrated a wonderful Christmas at home as a family; David and I went out for our anniversary on December 30, and then we brought in the New Year at our fellow liver family's NY Eve fundraiser for liver research. 

This past Monday, January 6, however, things went off-course. Who was I to expect things to go just as planned?  And whose plan was this anyway? I was reminded of a line from John Steinbeck's To A Mouse, "The best laid schemes o' mice an' men gang aft agley, an' lea'e usnought but grief an' pain for promised joy."

Elise's "numbers" were elevated again:  AST 250, AST 287, GGT 97

Fortunately, when our transplant coordinator calls with bad news, she always follows it up with a specific plan. In this particular instance, the "plan" was to start Elise on the oral steroid medication Budesonide. The tricky part was that Dr. Fishman ordered the inhalation formula of this med, which is designed to be administered via nebulizer/ breathing treatment. The pharmacist and I both spoke to our coordinator multiple times to clarify and ensure that the order was indeed to take this medication by mouth. When I went to the pharmacy to pick up the medicine, I was only given 2 boxes--or approx 6 days supply--and I was informed that our insurance was only covering the  2 boxes, and that the remaining 12 boxes was "outside of the appropriate clinical dosing parameters."  Of course, I called our insurance company, only to be told, "Yes, your coverage guidelines only allow Budesondide up to 2 boxes/month, for the treatment of Asthma or other respiratory conditions."  I responded, "Okay, great, well what does our plan cover for the treatment of rejection of a solid organ transplant?"  The response?? "Ma'am, I would suggest you file an appeal."   HA!  I'm one step ahead of you, buddy.  OF COURSE I am filing an appeal. 

The next day, I had Elise's hepatologist, Dr. Fishman, call in with the clinical rationale, and the entire quantity of Budesonide was approved. For anyone interested, the rationale was the fact that Elise can not safely take "cheaper" steroid meds such as Prednisone, or even Presnisolone, because of the effect on EBV; Budesonide is a newer steroid having less severe side effects, and is not likely to elevate the EBV significantly at all.  She obviously requires a larger dose by mouth for the treatment of rejection than she would require if prescribed for respiratory conditions such as Asthma.

Today, January 10, 2013, Elise had repeat labs done again, as well as a CT of her abdomen, chest, and neck. The labs were ordered to ensure that the steroids are doing their job.  The CT was ordered mostly as a precaution, "to take a look around," to look for any suspicious areas, and most importantly to provide a baseline CT in case we encounter any more serious EBV or PTLD (post-transplant lymmphoproliferative disorder) issues.  I am thrilled to say that Elise's current labs are very promising; her liver "numbers" are definitely going in the right direction, and this new treatment plan seems to be working very well.

AST 136 (down from 250,) ALT (down from 287,) and GGT 78 (down from 98.)

We are instructed to keep her steroid dose exactly the same for now, and we will also be keeping her anti-rejection med (Prograf) dose the same, as her blood Prograf level is 4.4 (goal range 3-5.)  Repeat labs are ordered fo Tuesday 1/14/14. 

I'm not really sure how many of you are still following this blog and/or Elise on Facebook, but if you are, or if you ever have, I thank you. We appreciate your support, prayers, and encouragement. 

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.