A YEAR in review

Geeez!  June 17, 2015 was the date of my last post! I knew it had been a while, but I didn't realize it's been a YEAR! I've gotten several emails over the past few weeks from readers and fellow "liver moms"--some who were interested in establishing that "no news is good news."

You know...it's honestly a little bit of everything.  There have certainly been times this past year that I didn't write because things were peachy, and there was no sense of urgency.  But, there have also been lots of times that have been very "touch-and-go," and it was all I could do to keep things together. We've had labs every 1-2 weeks, a couple of hospitalizations, a "Make-A-Wish"trip, and a new diagnosis over the past 12 months. I'm happy to report though--generally speaking-- I'm calling this past year a win! Whatever has come up....we've come out on the other side a little bit better for it.

So, last July, while in Louisiana for my cousin's wedding, we ended up in the ER. Turns out this was likely related to the "new diagnosis" that I'll be getting into....but we had no idea at the time. Elise just suddenly spiked a fever, and her vitals were abnormal.....but nothing else was found.  Her liver panel was fine, which was re-assuring, ears looked good, chest x-ray was normal, viral studies were negative.  My cousin-in-law, Dr. Kyle Guidry helped to coordinate things so that everything ran smoothly, and our ER doc and nurse did a fantastic job of coordinating w/ our liver team at Texas Children's . The decision was ultimately made to discharge us home, and we'd return to Texas and follow up at TCH

ER visit at Thibodaux Regional Medical Center

Make-A-Wish.  I simply can not say enough about this amazing organization. Let me preface this by saying that the mission of Make-A-Wish--which many do not realize-- is to grant the wishes of children with life-threatening medical conditions; the mission is to grant "a lasting wish," not necessarily a "last wish." Back in August, two wonderful volunteers from MAW came over to our house to meet with Elise.   They talked to her about her favorite color, her favorite food, her favorite animal, her favorite things to do, where she would like to go, and what she would like to go.  She would come to call these ladies --Brenda and Gracie-- her "wish fairies....and after they'd receive medical clearance and verification from her doctor...they'd be back for the "reveal." Her "wish" was to be granted!  More on that later....

Later in August.. Elise enjoyed fabulous liver check ups and labs, and she participated in a photoshoot with LifeGift for the 2016 Calendar.....   Miss March!

Elise presenting the finished product....the 2016 LifeGift calendar

November 2015.....annual family pictures (because the 8,000+ photos I have on my iphone is not enough!)

Photo by Kristen Purcell, La Vie Photgraphy www.laviephotography.net 

December 2015....making Christmas memories....

Christmas at BayBrook Mall....just prior to pics with Santa! :-)

January 1, 2015....we celebrated New Year's Day with our "liver family" at Kelli and Ben's house.  I was so excited, we got there about 6 hours early......haha....but that's a story for another day.   Potluck dinner....roasted marshmallows.... and our annual ornament exchange... it was a perfect evening!  We truly LOVE our liver family! 

January 28- February 2, 2016  Elise's Make-A-Wish Trip-  Disney Aulani in Hawaii!  Elise wished too go to Hawaii where she could go to a "big beach," "meet a dolphin," and "see Mickey and Minnie" and her other Disney friends. She and Ethan were able to do all of these things and more!  It was a fabulous trip for her and for the entire family. Grammie and Paw decided to meet us there in Hawaii...because you know they don't like to miss out on anything!

Our Make-A-Wish coordinators, Brenda & Gracie, when they came over for a surprise "reveal!" Elise learned for the first time that her wish was going to be granted and the details of our upcoming trip....2 days later! 

OFF to Disney Aulani in Hawaii!! 

Breakfast with the Characters! 

How's this for a "big beach?"  OMG, the kids were in HEAVEN! 

Ethan and Elise had the pleasure of meeting "Lula," a 32 year old dolphin at Dolphin Quest O'ahu.  

Make-A-Wish arranged for us to go Snorkling at the private lagoon which is part of the Disney Aulani property! :-)

Add caption

Meeting Stitch! 

GOOFY found us by the pool!

February 7, 2016.... Elise admitted to the ER at TCH with high fever, and her vitals were very much out of normal range.  She ended up testing positive for Flu and was admitted by liver team to the floor. The liver and endocrinology teams were very concerned with the severity of Elise's symptoms; that is, although we of course realize she is immunosuppressed, she became much sicker much faster than what would be expected in patients with her same immunosuppressed status. And so, we were to follow up with Endocrinology for further testing post discharge, and that led us to the new diagnosis which I previously mentioned-  Adrenal Insufficiency.  She is now prescribed "maintenance" hydrocortisone daily to replace the natural cortisol that her adrenal glands are currently no longer making, and she has "emergency kits" of Solucortef injections which are to be administered immediately should she ever become severely ill, followed by a trip to ER of course. 

 

On my birthday, March 9, we went to TCH for Elise's 3rd Annual Liver Transplant clinic. Everything seemed to be in check, and Elise was transitioned from the liquid forms of her medications to the pill form--something Elise has been BEGGING to do. Ever since then, she's been taking pills with no problem.

Liver Clinic - March 2016- with Dr. Fishman and our transplant coordinator, Sarah.

On March 23, 2016, we celebrated Elise's 3rd Transplantiversary!  I made her a huge cake, and we did a balloon release in honor of her "donor angel," Julia. It was a small celebration with just Elise, Ethan, David, and myself.....but a celebration of LIFE, nonetheless!

Happy Transplantiversary, Elise!

In April 2016... Elise's liver enzymes began to climb over the course of 2-3 weeks, so her team brought her in for a liver biopsy.  The biopsy ultimately showed mild rejection. What was a little tricky was that David could not get more time off work, so Ethan had to stay with Elise and me at the hospital for the entire 5-day inpatient stay. We had several friends offer to come pick him up and keep him for us, but the truth is that when it got down to it, he didn't want to go anywhere; he wanted to stay at the hospital with us. 

 

Elise was discharged from the Texas Childrens just in time to participate in her very 1st dance recital with Chara's Christian Dance Academy AND her Pre-K graduation! We have learned that liver disease and transplant is not just part of our history; rather, it is part of our journey.... a journey we are blessed to continue. If God brings you to it, he will bring you through it!! ‪#‎blessedbeyondmeasure‬‪#‎prekgraduate‬

Now, over the past 6 weeks are so, Elise has come off her heavy steroids, and her liver enzymes have been looking great! She made a remarkable recovery from this most recent episode of rejection, and we've been preparing for the Transplant Games of America 2016 in Cleveland! It was  HUGE success....we only just returned home within the last 48 hours as I write this post. I can't wait to tell you all about it, but it's going to require a post of it's own...... So STAY TUNED!

Let's GO....TEAM TEXAS!!!  Cleveland Bound!! 

Marathon, not a sprint....Marathon. Not. A. Sprint.

Hello again, friends. Our triop to Disney World in March was fabulous!!  The past couple of months, however.....not so much.  I'm not sure my reasons, exactly, for the lack of posts....except I will say that I just simply haven't wanted to re-live any of it.  I'm in a great place right now this afternoon though, so here it goes!

Our first stop in Disney World!!

Elise was officially transformed into a princess, and Ethan was made a Knight at Bibity Bobbity Boutique (BBB) in Disney! 

Elise's labs when we returned from Disney World in mid-March were fantastic! So much so, that Elise's liver doc dropped her steroid dose down.  Her labs continued to trend down for the next couple of weeks which looked great, but then on 5/20/15, her numbers suddenly began to skyrocket. A biopsy was scheduled--her 3rd liver biopsy in five months-- but because of the Memorial Day Weekend, the biopsy couldn't happen until Tuesday of the following week. By the time of the biopsy, Elise's liver panel was the worst it's ever been.

Specifically, on 5/28/15.... AST 605, ALT 1011, GGT 124, direct bili 0.0.

Left: Elise and me in the pre-op area
Right:  I got scrubbed in and ready to help facilitate induction of anesthesia.  For her past 3 or 4 procedures, they have allowed me to go with them back to the OR until she is asleep.  It's much easier for everyone that way. 

Elise's biopsy was completed with no complications, and she was admitted for treatment of mild rejection-- again. Dr. Fishman is not convinced that this is a new rejection, but rather, more than likely a flare up of the original rejection diagnosed in March. In any case, Elise was immediately started on a 5-day IV steroid regimin inpatient at TCH. She responded fairly well and was discharged with an improved liver panel-- not perfect, but improved.   The hope--or plan-- was that her numbers would continue to trend down on oral steroids at home.

Elise with one of our liver docs, Dr. Himes, during rounds.

5/31/15.... AST 99, ALT 324, GGT 129, direct bili 0.0

Imagine my discomfort when Elise's repeat labs last week didn't reflect a downward trend; rather, her numbers were rising again.

6/8/15.... AST 110, ALT 370,  GGT 203, direct bili 0.0

Dr. Fishman wanted to hold off on making any med changes last week though. He wanted to speak w/ a few other members of the team and wanted to have another set of labs before taking action. As we know from a couple of years of experience with Elise, her liver panel sometimes fluctuates for reasons completely unrelated to liver issues. I must admit, I had some serious reservations w/ regard to this plan to "just wait it out." But I kept telling myself that Dr. Fishman is almost always right, and something very similar to this happened last year, and he proved to be exactly right in waiting.  And so that's what we did.

Which brings us to our "liver clinic" appointment with Dr. Fishman today 6/17/15 at TCH. Elise weighs 38.5 lb and is 3'2" in height.  When Dr. Fishman and Sarah walked into our room, both commented on how wonderful Elise looks! Big white eyes always make everyone feel better. When Dr. Fishman asked Elise how she was doing, she responded, "I like tap dancing better than ballet, and I'm also doing swimming."  Well there ya have it, folks! Sounds like she's doing just fine! Lol. Seriously though, Dr Fishman loves to point out, "We have to look at HER, not just her numbers." And SHE looks great.  More GREAT news though is that Elise's labs today are in fact MUCH IMPROVED!!  Praise GOD!

Liver Clinic-- June 17, 2015.  Elise, our transplant coordinator--Sarah, and our primary liver doc, Dr. Fishman

6/17/15..... AST 54, ALT 89, GGT 115, direct bili 0.0


Dr. Fishman was really pleased with these lab results today and decided to decrease her Prednisilone steroids by half and re-check labs next Thursday. He says that if her numbers continue trend down, then great! That would be ideal. But if her numbers next week are instead trending in the wrong direction....he has a couple of ideas for possible med changes. One major change he is considering making would be to add an immunosuppressant med Cellcept as a supplement to her Prograf,  because as he explained, she just can't stay on high dose oral steroids forever.

Another part of the plan for the coming week is an ultrasound of Elise's liver. Apparently, Dr. Fishman reviewed Elise's biopsy report with the pathologist and other members of the team, and within the tissue sample, there were some suspicious cells in question.  As a result, and in the interest of being thorough and leaving no stone unturned, Dr. Fishman wants the ultrasound to take a close look at the blood vessels and profusion of blood throughout Elise's liver. According to Dr. Fishman though, he really does not believe that the ultrasound will show any problems because if there were not adequate blood flow in her liver, her platelets would be low and her conjugated bili would be elevated...none of which is the case. Elise's platelets and direct bili are perfect, as is her liver function, as evidenced by her perfect albumin, clotting times, and vitamin levels.

So what have we been doing since returning from Disney World in March?  Clearly, I haven't been blogging.... lol.  We have been LIVING life and enjoying every moment of normalcy. Towards the end of March, I traveled to California to run a half-marathon in Livermore Valley with my uncle, who has been a virtual "coach" to me since I began running last year. 

Parrain Denis and me at the Livermore Valley half-marathon, showing off our new "bling" after crossing the finish line!

Then in April, I ran in my third half-marathon with friends in Galveston.  

Crossing the finish line at the DIVA half-marathon in Galveston, TX

Ethan graduated from Pre-K a few weeks ago....his graduation ceremony was SO cute! Elise was actually still inpatient at TCH on the day of his graduation, but David went to stay with her so I could attend with Ethan.

Ethan, the pre-K graduate!!  So proud!!

Elise started dancing classes a couple of weeks ago, and she couldn't possibly be more thrilled. She tells me she prefers "tap" over ballet.  And last week, Ethan and Elise both started this Summer's swim lessons!! In May, we took a quick trip back home to Thibodaux/ Houma to visit with family, and we are looking foward to "Grammie and Paw" coming over to our house this weekend for Father's Day weekend! 

Elise LOVES to dance....she likes both ballet and tap....but tap is her favorite! :-)

Swimming lessons 2015.....this year both Ethan AND Elise are participating!! 

Thank you all for continuing to follow Elise's journey. Dr. Fishman has often reminded me in one way or another that "This is a marathon, not a sprint." I keep reminding myself of that fact as well. There is no black and white instruction manual on post-transplant treatment. It can be compared to running a marathon through the hills of California; that is, the hills or bumps in the road might seem to high to climb, but they're not, and easier roads will follow. There will be times when we  will be running downhill--and we will celebrate and take deep breaths; we will use the good times to gather our energy for challenges that may lie ahead.

Elise has proved time and time again that she will fight any fight. She knows how incredibly proud we all are of her, and she absolutely thrives on that. She told me on the way home today, "Mommy, my liver is not broken...it is perfect!" That it is, my sweet girl......your new liver is perfect, and we will keep it that way, no matter what. 

LifeGift 2nd Chance Run.  It was rained out....but Elise and I enjoyed ourselves anyway. We never pass up a chance to spread the DONATE LIFE message! :-)

A Long Week in Liverland

So…over the past few weeks, Elise's liver enzymes have been climbing.  No argument about that.  The questions was whether it was actually liver-related--as in rejection-- or whether it was a simply as response to Elise's recent back-to-back illnesses RSV and pneumonia.  Not to mention the surgery to remove her adenoids and place ear tubes last month.

Last week, on February 18, 2015, her labs were pretty bad.  Her team said not to worry though, that they were watching closely. That night, I attended a reception at Saint Arnold's Brewery, in Houston, to honor the new Chief of GI/ Hepatology & Nutrition at TCH, Dr. Schneider. I was happy to visit with a couple of my very good "liver mom" friends, and also, several of the GI/liver docs were there. Elise's primary hepatologist, Dr. Fishman, assured me, in our brief conversation, that Elise would be fine-- one way or another.
              

We drew labs again on Monday, February 23, 2015, and the numbers were not good; in fact, her liver panel was much worse.

AST 574, ALT 628, GGT 84, bili 0.0

Sarah called me. She cut to the chase.  She said, "We need a biopsy." To which I replied, "When?" "Tomorrow," she said…"7:00 am."  The good news was that the procedure was scheduled within the next few hours…..the bad news was that I was FLIPPING OUT!  Let me tell you… it is extremely difficult to function as a wife, mother, and employee in times like this.  I just felt like everything was coming crashing down….10 days before our trip to Disney World that has been in the works for the past year.

The next morning, Tuesday, February 24, we were checked in to TCH at 6:00 am. Elise was the model-patient…until it was time for separation.  Again, she was not going to go to the OR without me without a fight.  So…..the anesthesiologist  graciously agreed with my suggestion that I "scrub in" and go with her to the OR to stay with her until sedated…just like they allowed to me to do the last 2 times.  They are getting to know me now very well in the OR, and they know I won't "freak out," so it's getting easier.  Elise's anxiety came down several notches once she was assured that mommy was going with her to the "doctor's room."

I was re-united with her in the recovery/ PACU area around 10:20 am.  She was already wide-awake when I entered her "cubicle." And then, the nurse promptly advised us that Elise was on four-hour bed rest. Ummm…..okay.   Let's just say I did my best.  So did Elise….but she wasn't happy about it.

By the time the bed-rest was over, we had 2 stretchers locked side-by-side, and every toy that we could find in the room.  Hours passed.  I knew that the liver team was admitting Elise to the hospital following biopsy, but I had no idea what we were in for.  16 HOURS in the recovery room/ PACU.  That's what.  It was almost midnight by the time we made it to the floor.  She had played with every toy, she had drawn on the walls, she had slept, cried, ate and rank every snack they could give her…..and she still passed out as son as we got to the floor…..thankfully….because I passed out shortly thereafter.

Wednesday, February 25. We started the day on the 12th floor with a little pet therapy.   Of course, Elise LOVED it! She loves dogs….like her "Biggie," and she was very happy to play with all the dogs that visited her room.

Later that afternoon, we received our visit from Dr. Sonny, the attending hepatologist, with biopsy results.  We LOVE Dr. Sonny…especially the way he explains everything in such detail.  As in…drawings.  He actually drew out what he and the pathologist saw in Elise's biopsy and explained it to me so that I understood the problem, and the proposed solution.  What he said was that Elise had acute moderate rejection and a viral infection in her liver. He stressed that mild-moderate rejection is quite common in the first couple of years post-transplant, and it can be effectively treated and resolved. Howver, the issue of both rejection and viral activity in her liver at the same time  makes the problem a bit more complex, however, so they consulted infection disease team, who agreed with a plan to start the anti-viral medication--Valcyte--in addition to the steroids treating rejection. So that night, Elise was started on a 3-day "pulse steroid" protocol, meaning mega-dose IV steroids, and oral Valcyte.      

                    
                                           
                                           


Oh my God. Let me tell you….I have been praying all along…. every day….but that night…. I pleaded with God see us through this.  As always though, I held on to my faith and belief that "If God brings you to it, He will bring you through it."

On Thursday, Feb 26,  I managed to get an "unofficial update" consisting of just Elise's liver panel numbers pretty early in the morning.  GOOD NEWS!

AST 433, ALT 609,  GGT 95,  bili 0.0

Around 3:45 pm that afternoon, the liver team actually rounded and presented those results.  They confirmed she was responding well the the steroids. ALSO, that nasty possibility of DeNovo Autoimmune Hepatitis was essentially ruled out with with this second biopsy. There were absolutely no plasma cells found, and all autoimmune markers were negative.  So according to Dr. Sonny, "we are not dealing with a new liver disease…Elsie and this new transplanted liver are going to be A-okay….this hospital stay is going to be boring--but necessary--and one wee from today y'all are going to DISNEY….you have the dining play for Elise, right?

PRAISE GOD!!

Later on that day, Elise got a little cranky (thanks to the steroids,) and she started begging to go to the "store"-- aka giftshop-- to get "a surprise." I really didn't feel like putting real clothes on and leaving the room, but I decided the walk would be good for both of us, so off we went.  Of all the over-priced toys in the gift shop, Elise picked a lip smacker chapstick… LOL.  So I got off easy.  THEN, it turned out to be the best chapstick I've ever bought, because on our way out of the store, we ran into her primary liver doc, Dr. Fishman!  Of course I was thrilled with the opportunity to chat with him. He basically re-interated everything previously discussed with the others on the team, and he said that he expected Elise would be discharged Saturday after the third round of IV steroids. As he started to walk away, I asked, "So…I guess we have to return for labs next week between discharge day and Disney?"  His response?  "Guaranteed….unless I'm going with you!"  Lol.  Fair enough.

Friday, February 27,  2015.  The liver team was very late to make rounds, but I managed to snag a sneak peak again. Can't reveal my source, of course. :-)

Later in the afternoon, liver team came in with the official word.  Well…. OK.. if you insist….I'll set up the scenario for you…..  LOL.  You know, I already had the lab results.  Well….Dr. Sonny came in with his student, resident, liver fellow, PA student, etc…..and he asks resident for all of Elise's results….. AST? "196."  ALT? "446."  Then… he asked for GGT. HELLOOOOO… the most important marker for rejection.  Resident MD respond, "I didn't write that down."  I responded, "88."  Comic relief for everyone in the room…besides that resident MD.  Sorry.  They might have forty patients…but I only have the one.

I can not believe the lability of Elise's mood while on steroids….one second, she was my sweet princess; the next second she would seem possessed, throwing herself on the ground, and no one could reason with her.

Also on Friday, we had Elise's post-op follow-up with the ENT and a visit from daddy and Ethan!  It was as good as days come impatient, as far as I'm concerned.  Around 8:00 pm, Elise received her last dose of IV Solumedrol 325 mg….aka….steroid bomb.  Thankfully, she slept through the night, and so did I.

Saturday, February 28…labs were drawn at 7:30 am, and I started asking around for results at 8:30 am. I found a source which obliged around 8:45 am, and the results looked GOOD to me, so I was able to wait on rounds in peace.

AST 183, ALT 382, GGT 90

The team rounded around lunch time, and we were discharged as planned! YAY!!  Of course, she is home now with some adjustments to her meds, but totally manageable.  The team doubled her anti-rejection med, Prograf, to 0.5 mg (1 mL) twice daily and added Prednesilone (steroid) 10 mg/day, Valcyte (anti-viral,) and Prevacid to reduce stomach upset. We will go back for outpatient labs on Wednesday, March 4, and then OFF TO DISNEY WORLD the next day!

We are so blessed.

Is this week over yet??

Hello friends… it's been a long week.  Let me give you a review.  We have routine news, bad news, and good news to share! What else would one expect from "Liverland?"

Last Thursday January 29, Elise underwent her scheduled operation for adenoidectomy and ear tubes-reinsertion.

The only little problem we had was separating her from me in the pre-op area.  But I quickly suggested that they allow me to scrub in and go back with her to the OR, so as to reduce the trauma [for both of us.]  

My husband, David, being an anesthesia provider, can't believe that they allow me to do this, but they do…..this is the second time in a row.  Thankfully, we have been having very reasonable anesthesiologists, who trust me not to "freak out" when Elise goes limp in my arms. Now, let me tell you….there is a HUGE difference between your child sleeping in your arms and your child falling unconscious in your arms.  But nonetheless, I know what to expect, as I have done it before and acquainted myself with the process of anesthesia, and it is MUCH less traumatic for her to fall asleep this way than in a cold room with strangers in masks after screaming for several minutes as she walks down the hall.

I digress….Elise did GREAT with the surgery… so great, in fact, that the ENT and liver team decided to discharge her home with pain meds and 3 days of antibiotics rather than keeping her inpatient overnight as originally planned. I personally couldn't have been happier to bring her home. She did struggle with pain for a couple of days, but nothing unmanageable.

This past Saturday, approximately 48 hours post-op, I noticed she started coughing.  I tried to rationalize, telling myself she just had her adenoids removed, and her throat is probably scratchy and irritated. Then on Sunday, I became a little more concerned, as her cough became worse, and she spiked a fever of 101.2. I decided that this warranted a trip to the pediatrician in the morning.

On Monday morning, Feb 2, I took her to see her pediatrician. Her o2 saturation was 97% at that time. She was coughing quite a bit, retracting, and breathing very fast, but after an albuterol breathing treatment, her symptoms improved, so we were sent home.  I asked whether antibiotics might be warranted, questioning whether this might be--or might develop into- pneumonia, as we have experienced several times in the past. But…you know…doctors are under pressure to avoid ordering "unnecessary tests" and to also avoid antibiotics whenever possible. And so….we went home and started up breathing treatments three times/day. 

Yesterday, the coughing was worse, but she didn't really have a temperature over 99-100, and she didn't appear to be in distress…..until later in the evening.  When I was getting her ready for her bath, I noticed she was breathing fast--approx 38-40 times/minute, retracting, and when I checked her o2 saturation, it was ranging 88-92%.  I gave her a breathing treatment, and it improved to about 94%.  I really debated at that point about whether or not to bring her to the ER right then and there.  I decided to just increase breathing treatments to every 3-4 hours over night, checking SATS frequently, and try to wait and bring her in to see the doctor again this morning. So that's what I did.  I checked her and gave her a treatment at midnight, and again at 3:30 am this morning.

At 8:00 am, I spoke to Elise's pediatrician as I was on the way to her office. When I gave her a run down of her vitals overnight and indicated that her temp this morning was 100.3, she told me to head straight to ER at TCH. She said she would notify liver team that I was on the way with Elise, in respiratory distress, and that I should not have to wait to be seen. And I didn't.  I never even signed in to the ER. Come to think of it, I don't think I ever signed a "consent to treat." I'm sure I'll get a phone call about this tomorrow. 

Anyway…chest x-ray and labs were ordered quickly after we met with the first set of doctors- the ER resident, fellow, and attending MDs.  Liver team quickly involved themselves in Elise's plan of care, and they consulted pulmonology as well, since Elise has been followed closely by pulmonology since last year when she had several  bouts of pneumonia and a case of RSV. The ER resident came in shortly after the x-ray and stated, "the x-ray looks clear."  That didn't sound right. I asked about labs. At that point, the only thing back was her CBC which showed an elevated white blood cell count at 15,000. I asked, "well, that WBC looks like an infection brewing….but your'e saying there's no pneumonia or bronchitis, etc?"  She responded with comments that pulmology should be on their way down, and they'll give their opinion.  Good.  Because I could hardly wait to hear it. 

The pulmonologists did see her shortly thereafter. They reviewed her x-ray and examined her, and without a doubt, they confirmed that Elise has "full blown left-side pneumonia." They indicated that they could hear it on her left side, and after reviewing her history, suggested this is likely a bacterial aspiration pneumonia resulting from anesthesia during her recent surgery.  They spoke with liver team, and then ordered a round of IV Rocephin antibiotic to start treating the pneumonia. 

The only question that remained was whether to keep Elise inpatient or discharge her to treat the pneumonia at home. The ER attending deferred to Pulmonology attending, who deferred to liver team attending.  I asked, "Well, who is the liver team attending on service right now?" I was told, "Dr. Doug Fishman. He said Elise is well-known to him."  To which I replied, "LOL, you think?  He's coming down here to see her and talk to me, right.?"  "Yes, I believe he is," said ER doc. 

I could hear Dr. Fishman in the hall several minutes before he actually came into the room.  And then there was "the knock."  I can't count the number of times I've heard that knock during liver clinic appts and hospitalizations over the last 3 years. That knock actually makes me happy though, because I know that things are under control when he's around. 

And so, Dr. Fishman examined Elise, and then asked whether I had seen her liver panel. Well, as a matter of fact, I had.  He assumed as much…he knows I'm all up on her numbers hot off the press. 

He couldn't help but grin.  That's right.  Her current liver panel actually warrants a SMILE!  SHE"S BACK AT BASELINE!  Even in the face of pneumonia!  

AST 68, ALT 61, GGT 40. 

Which brings me to the rest of my discussion with Dr. Fishman.  You know, I have already had a consult/ liver clinic appt on his books scheduled for next week, Feb 11, to discuss in detail the new diagnosis of DeNovo Autoimmune Hepatitis (AIH.) He acknowledged that upcoming appt, then offered to start the discussion now, while we were face-to-face.  

Bottom line… Dr. Fishman says he is actually no longer ready to commit to the diagnosis of DeNovo AIH. He said that he has not started meds yet to target AIH because it may be "something to watch for but not necessarily diagnose" at this point. We reviewed her biopsy report together, citing the fact that there is absolutely no evidence of any fibrosis or cirrhosis, or any damage to her liver whatsoever.  There was 1 single plasma cell identified, but Dr. Fishman says that in a case of true DeNovo AIH, he would expect to see a whole host of plasma cells. The ANA profile, he said, pointed to DeNovo AIH, but it is more like "consistent with," and not necessarily a conclusive.  In any case, he says, "in a Dr. Shepard-ism," "MUCH better to have a little touch of rejection or Autoimmune Hepatitis than to have a real post-transplant complication…. like post-tranpslant lymphoproliferative disorder (PTLD,) which would be a risk if we start throwing steroids and increased immunosupressive therapy at Elise to target autoimmune hepatitis."

I can't even tell you how much better I feel after this conversation with Elise's liver doc, Dr. Fishman.  I just wish it wouldn't have taken an entire day in the ER fighting pneumonia to get this face-time.  But now I feel even better prepared for our appointment with him next week. I won't be so much like a "deer in the headlights" going into it. 

Tonight, we are back home as a family.  Elise was discharged home after receiving IV antibiotics in the ER, and she is to continue oral Cefdinir antibiotics x 14 days at home.  We will see her pediatrician tomorrow morning, who will give her an injection of an additional dose of Rocephin, and then we will be following up with pulmonology and liver clinic next week. 

On Friday, Elise's Grammie & Paw will join us to attend the Houston Rockets' basketball game, where Ethan and his TOT basketball team will perform for the pre-game show.  I believe he will be receiving his first trophy, and he couldn't be more excited.  I couldn't be more proud. 

I just couldn't be a happier mommy.  We have our challenges, but doesn't everyone?  As they say, "what doesn't kill you makes you stronger."  And I know for  fact that everything we battle with Elise makes me a better mom, a better social worker, and a better wife.