Liver Clinic, Trick or Treat, Birthdays….oh MY!

So….things have been kinda crazy around here….in a GREAT way!  It's been over 6 months now since Elise has had an inpatient stay at the hospital, and as of last week, she's free of TCH "liver clinic" until her 2 YEAR annual transplant review clinic on March 4, 2015…..the day before we leave for Disney World!!!

Last Wednesday, October 29, David and I brought Elise to TCH for "liver clinic. Her liver panel was a bit elevated was compared to her labs last month, but her liver doc, Dr. Fishman, says he's not worried because she has been fighting off a cough and sniffles for the last couple of weeks, and she's been experiencing a flare up of asthma as well. Everyone at clinic says Elise just looks fantastic though in general, and they are very pleased with everything at this point. She is 3'1" tall and 34 lb, which is perfect, so we only had the pleasure of seeing our dietician in the elevator on our way out the door! 

For anyone interested in the specifics of Elise's current labs, here's the main numbers we look at:

AST 58 (up from 45)

ALT 56 (up from 44)

GGT 40 (up from 17)

direct bili  0.0  (same)

We will be repeating labs on November 20 to see where things stand. Hopefully, all of her numbers will be back to baseline.  

VITALS….. liver clinic  10/29/14

next "liver clinic"  MARCH 4 2015…….wooo hooooo!!!

Once liver clinic was over, we were free to PARTY ON!!!  

October 31…Ethan & Elise's first real.trick-or- treating experience.  My mom and dad were here to enjoy it with us, which was wonderful!  We visited about 10 houses before Ethan declared, "Okay, we have enough treats!!"  And that was that…we went home….and everyone was delighted!  David went to a lot of trouble painting his face, and he said we only had one trick-or-treater here at our house.  I think everyone went to a trunk-or-treat event at a local church that we knew nothing about until it was too late.  In any case,  it was lots of fun, and I wouldn't change a thing. 

'bout to get our trick-or-treating on!!  

Trick or Treating 2014

November 2….Princesses & Pirates birthday party for Elise and Ethan.  Elise turned 3 YEARS OLD on October 18, and Ethan will be turning 4 YEARS OLD on November 12.  They have all the same little friends at school and are at the perfect age to share a birthday party, so we went with it, and it was FANTASTIC….if I do say so myself! I still feel like I haven't slept in about a month, but that's okay……totally worth it.  

The menu consisted of Pirate Jake's Jambalaya, Cannonballs, Tiara Tea Sandwiches, Royal Carriage Dip, Chip's Chips, Sword Kabobs,  Cinderella's Glass Slippers, Walk-the Planks, and of course princess and pirate cupcakes for the birthday girl and birthday boy!!  I'd venture to say that my first experience with Pinterest was a success!  The kiddos are still talking about their party and the castle that magically appeared in the backyard.  I simply love seeing the world through their eyes, and on occasions like these, our family's blessings are abundantly clear. 

We were so happy to be able to share Elise & Ethan's birthday celebration with my parents, several "liver friends," a few of our wonderful teachers from Children's Lighthouse, classmates, and Elise's donor angel family, the Wardwells.  It was a beautiful day in every way!

LIVER MOMS!!  Me, Tara, and Kaylin! :-)

My little princess Elise, any my Jake the Pirate!! 

Celebrating with the Wardwells, our donor family!  

Elise, Ava- Julia's daughter, & Layla0 Julia's niece.  Beautiful girls!! :-)

Elise and Darlene, Julia's mom! :-)

cupcakes…and cookies…and brownies…OH MY! 

blowing out candles!!

PINATA!!  a.k.a PIRATE LOOT & PRINCESS TREASURE!

Now, just to share a little of what's going on with me…..I believe I have mentioned that I have been training to run the Houston 1/2 Marathon on January 18, 2015. I've never run a 1/2 marathon before I registered.  Heck…I had never run much more than 1 or 2 miles in PE class….LOL.  BUT…..after being introduced to the Todd Krampitz Foundation when I spoke at their kick-off event in August, I decided that this is something I want to do;  there is no cause more important to me than organ donation awareness.  An organ donor saved my daughter's life.  And I'm going to pay it forward.  Every chance I get.  So I am running as part of the "Run for a Reason" program, benefiting the Todd Krampitz Foundation. 

As part of my training program, I ran my first 10K race over the Galveston Causeway/bridge on October 18. 

10K Galveston FINISHER

 After the race, we took our annual family pictures!  I love pictures….in case you can't tell. Despite having thousands of snapshots on my cell phone, there's just something about professional pictures that gets me every time.  Literally.  I mean…..it's truly an investment. Our amazing photographer, Kristen, with La Vie Photography, has been with us since my maternity session during my pregnancy with Ethan.  The kids know here and love her, and she captures our family so beautifully. Whether it was the milestone pictures of the kids' first years, or that last quick "picnic" photo session shortly before Elise's transplant--the one that I hoped wouldn't be our last family session--Kristen has not let us down.   

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

Thank you all for continuing to follow our story. We are truly blessed beyond measure. 

the Latest and Greatest in Liverland...

Let's see…where did I leave off?  Oh yes… Transplant Games of America!  Well, we're actually still recovering from the excitement of TGA 2014 in Houston, and we're looking forward to TGA 2016 in Cleveland, Ohio.  Anyway, since the games ended, we've been busy bees around here.

Last month, in August, following the Transplant Games, I had an opportunity to volunteer with LifeGift, our organ procurement agency, to spread the DONATE LIFE message at the Diabetes Expo held at Reliant Center.  I have been so eager to get more involved with LifeGift, so I grabbed this chance since the Diabetes Expo was held on a Saturday when I was off from work.

                                   

This, this past week, on Wednesday, August 20, 2014, I had the privilege of speaking on behalf of organ recipients at The Todd Krampitz Foundation 2015 Kick-Off event. The TK Foundation is one of the 2015 "Run for a Reason" charities affiliated with the Houston Marathon on January 18, 2015. Well…while I was organizing my thoughts regarding "our story" and preparing to speak at this event, I decided that I should sign up to actually run the Houston 1/2 marathon with the TK Foundation!  I've been trying for quite some time to muster up the motivation to train for and run my first 1/2 marathon, and if this isn't it, nothing is. The mission of The TK Foundation and my own personal mission are one in the same--to promote organ donor awareness!  I need to raise at least $500 for the organization in order to officially be registered for the 1/2 marathon and get my bib!

                                    

I am always happy to share our story, yet it always seems so difficult when it's time to step up and do it.   Reliving our experience is so very emotional.  The cracks in my voice always remind me that "this actually happened." I will never stop telling our story, because I believe our story carries an important message in support of organ donation, and it provides hope to others who may be experiencing similar challenges. Also, you know our "donor angel" is an important part of our story, and I want to honor her, as well as all organ donors and organ donor families.

In speaking at the event this week, I first stated that my presence there was only possible because a 20 year old young woman--Julia Wardwell-- signed herself up to be an organ donor shortly before she passed away. I talked about the fact that as a clinical social worker, organ donation has always been a significant issue to me; however, I never imagined for one second that I'd be sharing my personal experience regarding the gift of life. I then shared details about Elise's liver disease, Biliary Atresia, and the complications she endured leading up to her liver transplant. Of course, I detailed the moment that we received "the call;" Ethan lost his shoes somewhere en route to the hospital that day, but he would not be losing his sister. I shared my innermost thoughts during Elise's transplant operation…..that I wanted the whole world to be praying not only for Elise and her surgeons, but for her donor and donor family, for "without the organ donor, there is no transplant, no hope, no gift of life." I was happy to talk about Elise's amazing recovery post transplant--her discharge 9 days following the surgery, beginning to walk at 17 months old, her transition to regular meals as opposed to feeding tube, her "real weight" gain, her return to preschool with her brother, and her gold medal in the Transplant Games of America last month. We know that the deep scar across her belly tells the story of her battle though--a battle that she would have lost had it not been for her donor angel's life-saving gift. I ended by describing the relationship that we have developed with her donor angel Julia's family since our reunion last year after they received the letter that I wrote anonymously to them. Of everything that I have learned about Julia, what is most important to me is this: the fact that she registered herself as an organ donor is just so true to her nature and intention to become a pediatric nurse; she truly reminds us, "It's never too late to be what you might have been." Clearly, the gift of organ donation has restored life not only to Elise, but to our entire family.  We are eternally grateful to donors everywhere and their families. 

                                     

                                      

CLICK HERE to SPONSOR ME to run for The Todd Krampitz Foundation in the 2015 Houston Marathon and support this cause that is so very important to me!!!!!

Finally, I am happy to announce that Elise's current labs are EXCELLENT! 

For those interested in he specifics:

AST 53, ALT 43, GGT 17, serum prograf level is perfect 3.5 (goal is 3.0- 5.0!) 

We don't have to go back to TCH for labs for a month!  And then our next "liver clinic" is scheduled for October 29. 

                                       

She brought home the GOLD!

We all know that Elise is a CHAMP and is already gold….but this past week, she participated in the DONATE LIFE Transplant Games of America 2014, held right here in Houston, TX for the first time in 32 years.  And I am proud to say that Elise truly did bring home the GOLD medal on the final day of the event….we dedicate her games to her donor angel, Julia Hillary Wardwell and her family.  Our experience this past week was amazing….we have created memories that we will treasure forever.  Let me tell you about it. 

Friday, July 11 was registration activities and the Welcome Reception held at Hilton Americas, an AAA 4-Diamond hotel conveniently located in the heart of downtown Houston and connected to the GRB Convention Center.  I spent a good portion of the day volunteering in the TEAM TEXAS room before picking up Ethan and Elise and then retrieving my parents from the airport in the afternoon.  We then went on to the Hilton, picked up our credentials and registration packets, and thoroughly enjoyed the Welcome Reception that evening.  As I looked around at the hundreds of transplant recipients, donors, donor families, and supporters, I began to realize the enormity and significance of this event. 

Saturday, July 12 was a very full but exciting day.  We started out at 8:00 am at Allen Parkway for the 5 Walk & Run, which Elise and I completed together. Honestly, the heat was brutal, but rather than focusing on the temperature, I enjoyed the time with Elise and found each step in the stifling heat to be very symbolic of the transplant journey we have been walking since her diagnosis. Rather than miserable, it was empowering. Just as I can walk/run a 5K in the Summer heat with Elise in tow, I most certainly can and will support Elise, hold her up, and march through any medical obstacle we face.  We crossed the finish line together, and I thought to myself, "We got this!"  

At 11:00 am, we met the Wardwells--Elise's "donor family"-- at Guadalajara Hacienda Mexican restaurant for lunch before the Donor/ Recipient bowling event, in which Elise participated with her donor's daughter, Ava, from 12 pm-3 pm. The bowling event was held at Lucky Strike bowling alley downtown, and it was such a special experience for us….a great day….and a real celebration of life in every way. Elise & Ava (and Ethan too….shhhhh) bowled together and had a blast! Who cares about points…..I never even noticed the score board, and the teams we ware bowling against left long before we did. There were no actual strikes on the lanes, but what struck me most was that it felt like such a "family" event. We are family with the Wardwells.  Their daughter….sister……mother…..lives on in Elise.  Elise embraces them as if she has known them her whole life, and I'm not sure that I can describe in words how that makes me feel….so suffice it say that my heart is full.  We are blessed to have Julia's family as part of our own….to know them and love them. 

At 5:00 pm on Saturday, we met with TEAM TEXAS for official team photos. Our team filled the room. Elise refused to sit for the photos without me, so I popped into the pics with her! Immediately following team pictures, we boarded the shuttles which transported us to the Opening Ceremonies, which began at 7:30 pm. It was an incredible experience to escort Elise on to the field with Team Texas.  One day, she will be able to walk on her own-- and I will enjoy watching her  in all her glory from the stands--but for now, we're a joint act. 

On Sunday, July 13, Elise had no scheduled sporting events, but we did attend the TGA Family BBQ at Bayou Music Center…. a live music venue located in downtown Houston which has hosted big names like Cold Play (incidentally, one of Julia's favorite groups,) John Legend, Norah Jones, and Nickleback since 1997.  The food was great….the country music was great…and the dancing was GREAT!  Elise danced her heart out with her Paw, and I actually captured it on video! 

On Monday, July 14, Elise and I had the honor of pinning a pinning a quilt square in honor of Julia onto the TGA 2014 Quilt during the Quilt Pinning Ceremony. I said a few words about Julia and the impact that her decision to DONATE LIFE has made on Elise and on our family. There were many donor families there who pinned squares also, and to hear them speak…to hear their stories….was something I will never forget. I thought about all the transplant recipients there at the games…..all of those we met…..our friends…..and how can you help but think that for every recipient, there is an organ donor…..someone who gave the gift of life…..all true heroes.  The TGA 2014 Quilt will now be sewn together and completed, and it will travel around the country for years to come.  Next stop….Cleveland, Ohio 2016.

Tuesday, July 15.  Elise's big day…..her main event…the Cornhole (ages 5 & under division.) We had breakfast at the Hilton and then arrived for official practice in the convention center at 9:00 am.  Elise had several great practice rounds….probably too many….because when the actual competition began at 10:00 am, she initially froze….she refused to pick up a bean bag….she sat on the floor and wouldn't budge.  My heart started to sink, as we all know that 2 year olds can be very head-strong.  I knew good and well that if Elise decided she wasn't going to do it……she wasn't going to do it.  Finally, by God's grace, after watching 2 or 3 other kids take their turns, she stood up and gave it her all.  She thew one bean bag after another for four rounds….her total points was 22, and she was named the high point scorer!  At 11:30 am, she was presented with the GOLD medal for Cornhole in her age bracket. I suppose you could say she was overwhelmed with emotion, because when the medal was placed around her neck and she heard the applause as she was put on the top of the podium, she screamed. It's a little funny to me now as I think back on it and look at the pictures…. LOL.  She eventually calmed down, and she was thrilled to have her medal. I had been talking up "the medal" that she could get for the past 6 months.  She was only able to participate in this one event, and by God, she took home the GOLD!!  We are so proud.  We are truly blessed.  I know that this gold medal will mean so much more to Elise in years to come, but right now….in this moment….it absolutely means the wold  to me. Since Day 1, it has been my mission to ensure that Elise lives as normal a life as possible and that Biliary Atresia and transplant does not hold her back. This gold medal proves that nothing is impossible for her, and it shows me that I am doing my job. She is a fighter…a champion….and she can do whatever it is that she wants to do. I know that great things await her. 

Happy Liver Dance

We had "liver clinic" this morning, and I was able to return home and promptly make a "Wonderful Wednesday" post on Facebook, which means that we're doing the HAPPY LIVER DANCE tonight!  Seriously, I can not adequately explain my relief as I reflect on the outcome of our clinic appointment today.

We started out bright and early with labs at 7:30 am. The blood draw went exceptionally well….just one stick, five vials of blood, and no tears! Elise then enjoyed her breakfast treat--a sausage burrito and milk-- and we were off to the 11th floor for clinic.

Today, June 25, 2014….waiting on liver clinic…

When Sarah, our transplant coordinator, walked in the room, Elise said, "Where's Dr. Fishman?"  Happily, he wasn't far behind Sarah, and they were quick to say that Elise's labs just look BEAUTIFUL! We are so happy that Dr. Fishman made the decision to be patient with her labs rather than jumping to biopsy in April when her liver enzymes were elevated. Her current numbers are GREAT! AND, let's not forget that she has had bronchitis this past week and is currently taking antibiotics, so I was bracing myself for less-than-stellar labs.

Here's what we're looking at….
AST 52,  ALT 49, GGT 29, direct bili 0.0, Albumin 4.2.

We chatted with Dr. Fishman and Sarah about a "little of everything"…about our recent trips home, upcoming Transplant Games of America, and a possible trip to Disney World within the next year. I mentioned that Elise eats just about anything these days and has been asking for random foods such as "rice" lately.  Dr. Fishman says, "brown rice….give her brown rice…and she IS still on skim milk, right?" LOL! Which brought us to the topic of diet/nutrition.  Her current weight is 31 lb 5 oz, and height is 2'11".  This puts her in the 75% for weight and 50% for height. He said she's fine right now, but we just just need to watch her and continue to encourage low fat and less sugary foods; basically she needs to follow a "heart-healthy" diet, which is also a "liver-healthy" diet. 

Back to the subject of the Transplant Games of America (TGA)….the games are coming up July 11-15, and Elise is proud to be a part of TEAM TEXAS.  The word on the street is that at 2.5 years old, she is the youngest "athlete" on our team, possibly even in the entire games!  On Saturday, July 12, she and I will participate in the 5K walk/run from 8 am-10 am, then at 12 pm she will participate in the donor/recipient bowling "special event" with Ava and Layla-- her "donor angel" Julia's daughter and niece. The opening ceremonies will take place in the evening on Saturday.  On Sunday, July 13, we will attend the donor tribute and the TGA family BBQ. On Monday, July 14, Elise will be taking part in the Quilt-Pinning ceremony, where she will pin a patch on the 2014 TGA quilt in honor of Julia, her organ donor, her angel. Finally, on Tuesday, July 15, Elise will compete in her "main event," the Cornhole (i.e. bean bag toss) for ages 5 and under!

Our homemade quilt square for Elise to pin during the TGA Quilt Pinning ceremony

We have lots to look forward to….plenty of memories to make…..but most importantly, Elise is enjoying life every day! We are making the most out of every moment, never taking a day for granted. I've said this before, and I'll say it again…..Julia's gift of organ donation has restored life not only to Elise, but to our entire family.  

As I posted on Facebook on June 18…

Random moment 984,274,621,456 for which I am so very grateful! Elise enjoying splash day today at preschool just like all of the other kiddies! We are blessed.

If you are not already registered, please consider registering as an organ donor!! 

A month in review...

Today is June 8, right?  Yes, well then I have a little catching up to do….

Exactly one month ago,  Elise seemed to have a "cold." She frequently develops "reactive asthma" or "reactive airway" symptoms when ill, so I decided to get myself an early Mother's Day gift….a pulse oximeter. Well….within 12 hours of my coming home with this new gadget, it showed a significant decline in Elise's respiratory status…..so concerning that I paged the liver/transplant doctor on call and left for the ER rather than waiting on a call back.

Upon arriving in the ER, her vitals were critical, and she was placed on "shock protocol." Believe me when I say….there was no waiting around.  She was immediately triaged, and as soon as the triage nurse uttered the words "she's shocky," we were put in an exam room and quickly greeted by the ER attending physician, all available nurses who were simultaneously completing assessment, drawing labs and cultures, and starting IV fluids, the radiology tech w/ a portable x-ray machine, and a respiratory therapist who was taking a nasal wash sample for viral studies and starting Elise on oxygen.

                     

Her WBC (white blood cell) count was 17,000, and her chest x-ray showed pneumonia with a collapse in the left lower side of her lung. Her urinalysis and urine cultures were also positive for a urinary tract infection. She spiked a fever, which was > 102 by the time we arrived in the ER, and her temperature did not respond to the oral Tylenol given upon admit, so she was given IV Tylenol, approved by the liver doc. IV antibiotics were also started.  Given her immunosuppressed status, she was admitted by the liver/transplant team critical care team to the PCU.

Here is the blurb that I wrote on Facebook on May 12…

Waiting on docs to round, so no "official word" yet. Between not eating in 24 hrs and doing my crunches all night to see her monitor each time it alarmed, I'm tired and very sore. Lol. Elise is still on 10 liters o2 high flow with o2 sats sitting at about 92%, occasionally dropping to 90%. Heart rate and temp are much improved though. She's still breathing fast, in the 40s. They are monitoring her closely- we are still in the PCU. Labs from this morning are still pending. None of her cultures or viral studies have come back positive to my knowledge. So currently we have the pneumonia, collapsed bottom left lung, and possible UTI. She is on 2 IV antibiotics including Vancomycin and fluids. Her output seems adequate though I am interested in her actual kidney function on her labs.

Later in the day on May 12, I was able to meet with the liver team, and we reviewed Elise's liver panels. Her liver enzymes showed significant improvement since beginning the IV antibiotics, so my thought was that maybe this respiratory infection has been brewing for several weeks, and this has been the problem with Elise's labs!  Liver team agreed. 

Mother's Day came and went while Elise and I remained at TCH.  David visited with Ethan each day, and my Mother's Day present was a small/portable size Keurig coffee maker and K-cups!!  I mean….I have to say this is BRILLIANT!  I have frequently complained about the coffee available on the floor….and it's not always easy or affordable to take a walk to the Starbucks. I planted this idea in David's head, but I must credit my "liver-mom-friend," Dorothy, with this notion.  I remember visiting Dorothy and her baby boy, Jason, and noticing the Keurig machine in their room.  I was literally stunned and could not believe that I had not thought of this after more than 20 admissions to TCH in the past two years.  

Here is the blurb that I posted on Facebook on March 13….

Worst night we've had in a long time last night. Elise was extremely agitated, ripped out her IV and repeatedly pulled off leads and o2... She kept de- satting and took a few steps back on her o2 wean... Around 2 am after second back to back round of albuterol, she really went nuts. At that point I requested to speak to the attending ICU doc and discussed my concern that this was all being caused by the albuterol, and that we should switch to Xopenex which is what she is prescribed at home, and that's in her medical record here. He agreed and changed the order. Since 4 am she had been doing much better... Much calmer and down to 5 liters o2. ICU team says she is better, but not out of the woods, and probably several days or a week from being able to return home. ICU doc took a second look at the chest X-ray on my cell phone from March (when she swallowed the penny) and had me email the film to him so that he can do some comparisons and possibly consult pulmonology to look into whether there was a pre-existing issue with her left lung that could have exacerbated this whole situation. Waiting on today's word from liver team which will include a review of her labs. 

March 14….Elise started the day being given a trial without supplemental oxygen.  And she ended the day discharged home.  Prior to discharge, I mentioned to the resident MD that I was suspicious that Elise was about to spike a fever, as her face appeared flushed.  I was assured that this was probably just a side effect of the IV antibiotics.  Hmmmm……

On May 17, we were on our way back to the ER at TCH. Elise's temperature spiked to 102.2,  she was not urinating, and her oxygen saturation was again dropping. Liver team wanted her back in. Her chest X-ray  showed more inflammation than it did previously, so she was re-started on the IV Vancomysin and Zosyn….and an additional antibiotic was started….Azithroymsin, which treats mycoplasma pneumonia. She was also of course put back on supplemental oxygen.

                             


May 18…. David took over with Elise at TCH, and I went home to spend time with Ethan.  I hated leaving the hosital…ahem….I hated giving up control of the situation….but I really didn't have another choice.  David happened to be scheduled off the next day, and I need to work whenever possible to preserve my available PTO days for when I really need to take them. So I swapped off with David, returned home with Ethan, and brought Ethan out on a Mommy-Ethan date to Chuck E Cheese!!

                         


On May 19, Elise was discharged in stable condition, to continue oral antibiotics, and Daddy brought my baby girl home!!

Since Elise has been home, she has been doing GREAT!  During her hospitalization, one doctor mentioned the possibility of acquired tracheomalacia as possibly triggering Elise's respiratory issues. My first though was "no," but then I am prone to denial….so after a little research and discussion with Elise's primary hepatologist, Dr. Fishman, transplant coordinator, Sarah, and pediatrician, Dr. Pocsik, I decided I would feel most comfortable with a pulmanology consult…..as soon as possible.  So we have an outpt appointment scheduled with a TCH pulmonologist, Dr. Farber, on June 10.