"This is a Marathon, Not a Sprint…"

This post may be long-winded, so I apologize in advance. Part of the reason I blog is to process information and experiences, and I took away a great deal from my impromtu conversation with Dr. Fishman this morning. Actually, I suppose it wasn't really "impromptu,"since I had every intention of requesting a moment of his time following the TCH Liver Center breakfast this morning. 

As of yesterday, Elise's liver panel remains elevated, so I emailed Dr. Fishman last night with a few questions and issues I wanted him to consider; I requested his thoughts on whether Elise's elevated liver enzymes could be an adverse hepatic reaction to Augmentin antibiotic, and/or whether we had any evidence to rule out auto-immune hepatitis. After spending most of yesterday evening thinking, looking over dates, talking to other liver moms, and reviewing Elise's medication record, these were the two possibilities that really scared me.

So, when I arrived at the TCH liver center breakfast this morning, I was greeted by Dr. Fishman, and he immediately acknowledged my concerns, as he had already read my email. We spoke briefly before the breakfast and presentation and then again for about 45 min afterwards. I explained that I realized last night that Elise's last normal liver panel was 3/19/14, and she was started on the antibiotic Augmentin on 3/24/14 by her pediatrician. Last night, I discovered that Augmemtin can cause negative hepatic reactions including elevations in bilirubin, AST, and ALT, and findings of liver biopsy can be consistent with that of hepatitis. Dr. Fishman gave me a "kudos" for my discovery and stated that it will in fact need to be considered in Elise's differential diagnoses, but he also said that he does not feel this is the issue at hand, as this reaction occurs only in approximately 3% of patients.  In regards to auto-immune hepatitis, again, he said this is very rare, but it is indeed a diagnosis that will need to be ruled out. 

So, then, I asked Dr. Fishman about his gut feeling; I explained that I need to know how concerned I should be and what to expect now. His response? "This is a marathon, not a sprint." That's what he said. This is so true, and I have known this from the beginning, but hearing him say this today put things in perspective.  As he explained, Elise will be a transplant patient for the rest of her life.  While they realize that we want answers [yesterday,] a resolution to this one hurdle will not be the end; really, there is no finish line; there is only pushing on.  As he pointed out, "you have to look at the patient," and Elise looks great!  Yes, her liver enzymes are elevated, but her liver function and other labs are normal!  He said that we will re-check Elise's liver panel next Tuesday 5/13/14, and if there is not significant improvement, he will want a liver biopsy. His "gut feeling" is that a biopsy will confirm a viral infection in her liver such as EBV (Ebstein-Barr Virus.)  Possibly CMV, but since her CMV blood tests have been negative weekly, probably not. Elise's labs have shown copies of EBV in her blood for 8 months though, so there it is reasonable to believe that EBV may be present in her liver. For this reason, he hesitates to increase her immunosuppressent medication in an effort to bring her liver enzymes down; if she does have a viral infection of the liver, increased immunosuppression would cause the virus to flare up which could potentially cause a severe complication such as PTLD (post-transplant lymphoproliferative disorder,) or essentially, cancer.  So, okay then....a biopsy it is!  Definitive answers please!!  OR, a miraculous decrease in her liver enzymes!!!

Now, just for a moment, I have to go back to the TCH liver center breakfast this morning. What a great presentation!  Five of our hepatologists (liver specialists) spoke, as well as several special guests, and most of the liver center staff attended, including some of those who work behind the scenes with our liver kiddos, such as the interventional radiologist who has inserted both of Elise's PICC lines, and our pathologist, whose reports I have read many times in Elise's chart. It was simply amazing to meet a cardiologist associated with TCH who is a 57 year old survivor of Biliary Atresia--he is "kasai-only," no transplant as of yet, and living a relatively healthy life. Apparently, he had the "kasai operation" before the operation was even really named, and he showed us the back cover of a magazine from the operating room where his surgeon illustrated what exactly he did during the surgery. "This is my medical record," he said.  Wow!!!  Well, he certainly carried the message of hope for medical miracles home.

The presentations by the physicians this morning covered various liver diseases, several different ongoing research studies at TCH, and the statistics and outcomes related to liver transplant at our center. I was impressed to see that TCH led the nation last year, in 2013, in the number of pediatric liver transplants, completing 98 liver transplants--Elise was of course one of them. TCH also exceeds national averages in success of the liver graft and patient survival post-transplant. There are also more participants in the iWITH research study (complete withdrawal of anti-rejection medication) here at TCH currently than at any other pediatric liver transplant center. As I looked over the numbers in black and white....particularly the sheer number of solid organ transplants completed at TCH... I was struck by the fact thatfor every transplant, there is an organ donor.  Thank God for organ donors, and God bless our donors and their families.

Elise's primary hepatologist, Dr. Fishman, during his portion of the presentation  

Dr Himes captured this SELFIE
from left: 1/2 of Dr Fishman's face, me, Harriet & Eleanor (liver friends), and Dr. Himes

Thank you all for continuing to follow Elise's journey. We appreciate the support and prayers so very much!! 

Not Stressing...

Our transplant coordinator, Sarah, and I spoke several times over this past week. Today, we spoke again on the phone and exchanged several emails. Sarah says, "Erin, don't stress." I can't imagine why she thinks I would be stressing.  Well, there might be a couple of things…

Last month, for Elise's annual transplant review clinic, her labs were great;  she was essentially at her baseline:  AST 56, ALT 52, GGT 24.

This past week, however, her liver panel has been elevated, and there is no clear explanation. We have had labs drawn three times within the past 7 days. Following the first draw last Wednesday, after confirming her CMV result to be negative, Dr. Fishman increased her Prograf (anti-rejection med) from 1 mL twice daily to 1.5 mL twice daily. Even with this med adjustment, her liver panel is not exactly back to baseline, which worries me.  BUT, the good news is that her numbers are trending down, even if it is just slightly. 

Here is a review of her liver panels the last week:

Wed 4/16/14:  AST 94, ALT 139, GGT 43

Fri 4/18/14:  AST 86, ALT 118, GGT 42

Tues 4/22/14:  AST 80,  ALT 114,  GGT 38

I also inquired about her kidney function tests today. Prograf is notoriously hard on the kidneys, and since her Prograf dose has been bumped up a little, I just wanted to be sure everything looks good there and that she is well enough hydrated, etc.  Her BUN is 14, Creatinine is 0.24-- both very normal! 

Today Elise's WBC (white blood cell count) was 5.99, which is low (normal is 6-20), so Dr. Fishman suspects she may be fighting off a little bug in her system.  I also pointed out that her Prograf level is still 4.4, even with the increased dosage, and historically, she does not absorb Prograf as well when she has some sort of acute illness such as a cold. She does not currently have any symptoms of a cold or other virus, but I will be watching her carefully and will bring her to the pediatrician at the first sign. It is very important to be proactive and treat acute illnesses, even minor issues, because any infection can stimulate her immune system and possibly trigger a rejection episode. That being said, her doctors say that they are comfortable with the fact that her numbers are trending in the right direction, so we will just continue to monitor very closely.  We willl repeat labs on Sunday 4/27/14, and we are officially cleared to then proceed with our vacation plans, which will take us home to Louisiana for a few days, and then to Orange Beach!

So....repeat labs on Sunday morning.  Which means I will have to wait until Monday for results. Sarah gave me a friendly reminder today, "You don't need to call the liver MD on call to get results on Sunday; I will call you on Monday." PSHHH.... like I would ever do that!  lol.  Oops.

Anyway, this Saturday, April 26, 2014, TEAM ELISE will be participating in Liver Life Walk Houston 2014 for the 3rd consecutive year to benefit the American Liver Foundation. Elise will be leading her pack...probably in sparkly pink high heels, if I had to guess.  

Thank you all for the tremendous support you have all shown our sweet girl. She is so brave, and she amazes me every day. I don't know that I've ever had six tubes of blood drawn at one time ever, much less multiple times/week. But Elise endures this and more, and she does so with a smile on her face. 

One final note.... April is National Organ Donor Awareness month!  Elise was proud to be featured on the TCH Liver Transplant Center display board for the donate life day held on April 10. We attended the event, and we were very excited to meet the captain of Team Texas for the Transplant Games of America. He recognized Elise as soon as we walked up to the table....she is the youngest member of Team Texas, and she will be proud to participate in honor of her hero, her organ donor, Julia.

Elise checking herself out out on the TCH Liver Center display board!!

Elise and me with our team captain (TEAM TEXAS) for the Transplant Games of America

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.