BUMPS vs SPIKES

This morning, I brought Elise for her scheduled repeat lab work at Texas Children's Hospital, which was ordered due to her slightly elevated EBV (Ebstein-Barr Virus) level last week.  EBV was 2295 last week; ideally, EBV should be 0.  Anyway, labs were drawn this morning without incident, and we were back home in no time to begin the wait for results. 

As soon as I began texting my "liver mom" friends to find out whether they had heard from our transplant coordinator, as I was growing more and more anxious, our coordinator called. She asked, "Is Elise sick right now?" The dreaded question. That particular question from a transplant coordinator or liver doc can only mean one thing: abnormal/ elevated liver enzymes. My voice may have squeaked, as I responded, "No." I added, however, that I have been sick, so maybe whatever results she was about to report could related to Elise trying to fight off my cold virus; maybe she's just not yet symptomatic. Sarah agreed...."Definitely, that could be it." She went on to report that Elise's AST and ALT were elevated compared to last week, and that Dr. Fishman has ordered her anti-rejection medication-- Prograf-- dosage to be cut to 0.5 mL (0.25 mg) twice daily rather than 1 mL (0.5 mg) twice daily. Initially, I did not understand why we would lower her Prograf when her liver enzymes are already elevated, but Sarah anticipated my question and explained that Elise's Prograf level was 4.3, which is a little higher than their goal range of 2-3. It is important to keep her Prograf level low in order to keep her EBV level under control. So, basically, we are decreasing her immunosuppression to allow her body to fight off EBV as well as any cold virus she might have.  Sarah informed me that we need to repeat labs again next Thursday 10/17/13, but she said, "We're not worried, okay? Okay.

Lab results:  AST 62 (up from 52),   ALT 68 (up from 49), GGT 20

So I returned to my work for about 5 minutes before pulling out my notebook and analyzing her trend in labs line by line. I called Sarah, telling her that I needed a little further clarification. Specifically, I asked, "I know you said you all are not worried about Elise's current numbers, but how much wiggle room do we have? Her ALT spiked 19 pts, and Dr. Shepherd told me that a spike in ALT/GGT could mean rejection!" Sarah responded, "Elise's lab results reflect a BUMP, not a SPIKE!" Okay. So then I asked more questions, referencing the last time her labs "spiked." Again, Sarah corrected me. She said, "Elise's liver enzymes have never "SPIKED;" she has only had little, tiny "BUMPS" along the way since transplant.  A SPIKE would be an AST/ALT range in the high 100's or 200's. I told her that his additional information makes me feel so much better...that all I need is a little criteria for worry. Sarah said, "You guys are paying the doctors a lot of money to worry; let them do the worrying when they need to, and I'll tell you straight up when they are worrying." So I agreed to "pass the ball" and let Sarah serve, but I'm still the team captain.

So there's my lesson on the difference between a BUMP and a SPIKE.  I never was any good at volleyball, or any sport for that matter.

I realize that this update is heavy in the way of medical material and jargon which might mean very little to many of you, so I apologize for that; I did try to explain wherever possible. And for those that want all the details, there you have it. To summarize, Elise's lab results today were not exactly what I hoped for, but they were not unexpected considering Elise's known EBV issues, and her treatment team is not overly concerned; however, we are repeating labs next week to further assess the trend and make any medication adjustments necessary. 

We pray that Elise's liver continues to be happy and stable. I have all the faith in the world that our "coaches" Drs Fishman and Shepherd have lots of plays in their playbook to keep us on the winning side.  Most importantly though, I trust in God, and I envision him wrapping his arms around Elise's liver and binding any irritations or antibodies that threaten her.

We're GOOD; we're BLESSED; we're GRATEFUL; we're 6 MONTHS post-transplant!

Elise's had liver clinic yesterday at TCH, and things are looking GREAT!!  She is now 26 lb 2 oz and 33 inches (2 ft, 9 in) tall!! She's on a normal toddler diet w/ whole milk and a regular children's multivitimin....as in regular over-the-counter children's vitamins!!  Anyway, Dr. Fishman and her transplant coordinator walked into her exam room w/ such huge grins on their faces that my apprehension was eased, and I didn't even ask for exact numbers until approximately five minutes into the visit! You may not understand, but that is HUGE for me.  I'm usually standing in the hall trying to get someone to show me her labs.  Anyway, her liver panel is essentially the same as last month and fabulous, her blood counts are all normal, and her Prograf (anti-rejection) level is perfect, so no change in dosage!  Next labs scheduled for October 29, and next "liver clinic" is scheduled for December 4!

Current results.... AST 52, ALT 49, GGT 18, tacro level 3.6 

Last month results.... AST 54, ALT 49, GGT 18, tacro level 3.2

Now, technically her AST and ALT are still very slightly elevated compared to the "normal" ranges, but her doctors explain that this is due to the fact that they are running her prograf level extremely low for 6 months post-transplant, which is necessary in order to keep her EBV level under control.  In previous posts, I've discussed that her EBV (Ebstein-Barr Virus) load has spiked at times with higher levels of Prograf, and high EBV levels left uncontrolled could lead to post-transplant lymproliferative disorder (PTLD), or cancer. But hear me when I say that her EBV level has been well-controlled for several months now, and there is no discussion at all of PTLD right now. I feel confident that there never will be, because her team is on it!  

In other news, Elise gets to drop the Ursodiol med which officially leaves her on ONLY 1 MED- the Prograf!!  This is the first time in her entire life that she has only required 1 routine med/day. Granted, this particular med is paramount to life support for the foreseeable future.  BUT, I'll take that! 

We discussed her upcoming ENT surgery to have ear tubes placed which is scheduled for Oct 7 at TCH. Her liver doc says that he has consulted w/ the ENT/surgeon, and liver team will take a quick peak at her in post-op before she is discharged...but they assure me that the procedure will be quick, and she will be out of there within a couple of hours.  This will not be turning into a big complicated production.  

Now, I was hoping that ENT would be our last stop.  I mean, in the past 23 months she's now been seen by pediatricians, neonatologists, gastroenterologists and hepatologists, surgeons, anesthesiologists, a cardiologist, endocrinologist, urologist, radiologist, psychologist, immunologist, dentist, ophthalmologist, and allergist. BUT, we'll be adding pulmonologist to that list.  During liver clinic yesterday, her liver doctor asked that we head over to visit her pediatrician regarding her chronic wheezing and raspy breathing patterns that they have noticed the past few months at clinic. I've also mentioned that she sometimes gets into coughing spells with no other symptoms. We've been advised previously that she is at high risk of developing respiratory/ pulmonary problems for several reasons including but not limited to the fact that she was born 5 weeks premature with a pneumonia and a collapsed lung, she has been intubated for surgeries/procedures 6 times, her daddy has Asthma and seasonal allergies, and she's recently been diagnosed with a food allergy to eggs. Both her liver doctors and her pediatrician feel strongly that she is showing all the signs and symptoms of having developed Asthma, so she now has two prescribed inhalers and a referral to the pulmonologist for further recommendations and collaboration w/ her liver/transplant team. 

All in all though, we're GOOD! And we're GRATEFUL! We are so very blessed to have the amazing team at Texas Children's Hospital, even if her team does now include practically every specialty in-house there. Bottom line is they are recognizing and effectively managing all of her needs, and are keeping Elise happy and healthy!

If you recall, at the beginning of our journey, we were told "Elise will need a liver transplant before age 2 in order to survive." I simply can not believe that Elise's 2nd birthday is less than 1 month away, her liver transplant is 6 months behind us, and she is living life and thriving.  She's enjoying preschool every day w/ her brother and her friends, she's been swimming and LOVES it, she gets to play at parks and indoor playlands, she's outgrowing her clothes faster than I can buy them...now wearing 2T PJs and size 5 shoes, she's talking more and more every day, and she's potty-training!! 

Thank you all for following Elise's journey. Please pray, as always, for our "donor angel" Julia's family. Julia's brother is getting married this weekend, and she was planning to be dancing toThriller at the wedding.  Instead, she became a Hero, an organ donor, and in doing so, she saved my baby girl's life. The pain of her absence is not something I can even pretend to know, but I do know that I will honor her and remember her every day for the rest of my life.

God Bless Julia and organ donors everywhere. 

It's Never Too Late to Be What You Might Have Been"

In my last post, I believe I introduced you to Elise's "donor angel," Julia. Last month, we connected with her family through email and social networking and learned that she was 20 years old, a loving mom to a sweet little girl; she is very much loved and missed by her family. Julia was a nursing student here in Houston, focused on pediatric nursing; she would have undoubtedly helped to save many lives in her career. As I learned more and more about Julia, I created a photo book telling the story of one of the lives she did save--Elise's life--by becoming an organ donor. I ended the inscription inside the cover with the words, "It's never too late to be what you might have been." Julia's sister shared with me that she used this quote in her tribute to Julia at the memorial service.  Honestly, I can not imagine any words more suitable for our donor angel. 

So, this past Saturday, August 10, 2013, I was able to deliver this photo book in person, as we were blessed and privileged to meet Julia's family.

LifeGift, our local organ procurement organization, coordinated an amazing reunion on Saturday for us and Julia's family. Without rehashing all the detail, suffice it to say that there was a wide array of emotions in that room. We visited with Julia's mother, Darlene; her father, Greg; her sister, Holly; her daughter, Ava; her niece, Layla; and her uncle, Joby. Julia's mother presented Elise with several very special gifts on behalf of their family, and she also gave David and me a gift of sentimental items and pictures. Several members of the LifeGift staff were present to support us, and they led a moment of silence for Julia before we left.  KRIV Fox 26 was there to capture the moment of our "reunion," and the segment they produced for the 9:00 pm news that night was a beautiful  tribute to Julia as well as a testament to the importance of organ donation.

Click the link below to watch the Fox 26 news segment featuring our LifeGift reunion:

http://www.myfoxhouston.com/video?clipId=9190015&autostart=true

We certainly intend to stay in close contact with Julia's family. As I said to them on Saturday, we consider them part of our family now, and we want them to be part of Elise's life as she grows up. Julia's daughter and niece are not much older than Elise and her brother Ethan, and I hope that our families will create many more memories together in the future.  

"It's never too late to be what you might have been." So true. These words can apply to anyone. Be a Hero; Be an Organ Donor. It's very simple to register. Please remember to discuss your intentions with your family though, as this will relieve them of some burden while helping to ensure that your wishes are carried out and lives are saved.

Blessings

Praise God, from whom all blessings flow.  

The past few days have certainly been about blessings.  For those of you who follow me on Facebook, some of this will be redundant, but hopefully I'll be able to add a little detail to that which you already know.

"The Greatest Hero I Never Met was the Organ Donor Who Saved my Daughter's Life."   

I have some incredibly special news to share. As some of you may know, about 1 month after Elise's liver transplant, I wrote a letter to her "donor angel's" family to express our gratitude for their selfless decision to DONATE LIFE during their most tragic time. I had no idea whether we would ever hear back, but oh how I hoped and prayed that they would receive our letter and want to share their story with us. We released our identifying information w/ Life Gift about 3 weeks ago and waited. Yesterday afternoon, our donor angel's father sent me an email, thereby establishing contact between our families, and he introduced me to our donor angel, Julia. 

Julia was a 20 y/o loving mom of a 3 yr old little girl...a daughter...a sister...a friend...treasured by so many. She loved to eat Pecan Mexican popsicles, mexican food, and Raising Canes chicken. She loved music, especially Coldplay. An honors student, she went to college on a partial scholarship and was a nursing student in Houston, almost finished her clinicals, and looking forward to saving lives. Although her life was suddenly cut short, she has indeed saved many lives, and she will continue to do so through her legacy. She is missed every single moment of every single day. 

Shortly following Elise's birth and diagnosis of Biliary Atresia, we were told that Elise would likely require a liver transplant before age 2 in order to survive. My friends, Elise will turn 2 years old in October, and as you all can see, she is thriving, with a wonderful prognosis for a long and happy life! But we know that this would not be possible without our "donor angel," our hero, and her family. According to her father, if we want to thank anyone though, it should be Julia and God, as she registered herself as an organ donor; he says he simply fulfilled her last wish. For all this, we will be eternally grateful.

PLEASE consider registering to be an organ donor...save lives....be a hero. 

As I reflected over the past few days, I have been overcome with emotion, especially yesterday.  I cried thought the day, and various things set me off.  At one point, I had to get out of the house, so in honor of Julia and National Ice Cream Day, we drove to Pearland, to the nearest La Paltera, and ordered Pecan Mexican popsicles.  I loved seeing Elise's delighted response!!   Although Ethan didn't want much to do with it, Elise ate her entire popsicle and was not very happy when it was gone. 

This past Friday, I received a call from Elise's primary hepatologist (liver doctor) and her transplant coordinator with something of an update regarding her last not-so-good lab results.  They apparently received the results of additional tests which indicated Elise most likely had a virus causing the elevated liver enzymes on her last check; her EBV was slightly elevated again and some of her other counts were out of range. So, the med changes, including the steroid order, was canceled.  That was really GREAT news....not just because it meant less meds, but because a toddler with "roid rage" is a difficult scenario with which to deal. 

This morning at 7:00 am, I had to bring Elise for her scheduled labs at Texas Children's.  It was an incredibly long day waiting for results.  BUT, at approximately 1:00 pm, our transplant coordinator called me with the most amazing news:  Elise's liver panel looks terrific!!  Beautiful! Her liver enzymes are almost back to perfectly normal, but well within the team's goal range already! 

And her liver function tests are great! 

FOR anyone interested in the specifics, here you go:

Last week, 7/16/13:      AST 154/  ALT 150/  GGT 36/  direct bili  0.

This week, 7/22/13:    AST 61/   ALT 79/     GGT 31/  direct bili  0;  albumin 4.

Also, the goal for her Prograf (immunosuppression) level is 3-5;  her current level is 4.1.  Yay!! Our next "liver clinic" appt will be next Wednesday 7/31/13....no more labs until then!!

Thank you all for continued prayers and support and for following Elise's journey.  Please join me in praying for our "donor angel,"  Julia, and her amazing family. While tomorrow marks 4 months since Elise's liver transplant and "gift of life," I remind you that it also marks 4 months since this family lost Julia....a most beautiful life and beautiful soul.  As I mentioned earlier, we are blessed to have received such a meaningful response from her family, and we look forward to hopefully meeting them sometime soon!

Erin

A Game of Cat & Mouse

Today hasn't been such a great day.  Elise had blood work drawn this morning at TCH. It was a hard draw-- they had to stick her 3 times to get the blood needed.  Then, I literally waited all day for results.  I was really hoping that "no news is good news," and that the results would be good and "worth the wait," but no such luck.  Elise's liver enzymes are significantly elevated.  The first thing our transplant coordinator said this afternoon was, "Let me tell you the plan before I tell you the numbers because you might get worked up."  Who? Me??  Lol.  Well, once I heard the plan, it became very clear to me what was up, besides her liver panel. I asked, "Is this early rejection?" as the following numbers glared back at me from my spreadsheet…  

AST up to 154 from 53;  ALT up to 150 from 39;  GGT up to 36 from 16. 

At this point, I spoke to our liver center director, Dr. Shepherd (currently covering for our attending liver doctor, Dr. Fishman) who said to me, "Listen to me, I'm not worried.  If I was worried, we'd have you bring her in to the hospital for a liver biopsy. This type of jump in numbers is very much expected since we have been running her immunosuppressent level so low in order to chase down her EBV level. Now we will double her Prograf and start her on an 8-day taper of the steroids, and her liver panel will get right back in -check."  He went on to say that it's quite possible that we will see another rise in her EBV, however, over the next couple of months.   I asked, "So, basically, we're looking at having to play this game of "cat and mouse" indefinitely to keep her liver happy and EBV out of the picture?" Dr. Shepherd said, "yes." I took a moment to breathe, and then asked, "Tell me again why you're not worried about her current liver panel?"  

According to Dr. Shepherd, she's in good shape for several reason:  

1) she's a "fresh transplant," just 4 months post-op, and under normal circumstances (meaning no EBV issues), her prograf level should be running at 8-10; however, in Elise's case they are having to run her level at 2-3 in order to control the EBV.  Elise's prograf level today was 2.0, which Dr. Shepherd says is typical for patients at least 2 years post transplant.

2) Although her AST and ALT are increased significantly, her GGT is still generally within normal range. GGT is the major indicator of rejection.  Dr. Shepherd explained that elevation in AST and ALT simply mean that her liver is irritated and getting a little upset w/ the current situation, so the plan needs to be tweaked. 

3) TCH liver/ transplant team is "on it." 

And now, here's the PLAN:  We are to increase her Prograf dose to 1 mL twice daily and re-start the steroid Prednisolone on an 8-day scheduled taper of 3.3 mL per day x 4 days followed by 1.7 mL per day x 4 days. She will get repeat labs next week on 7/22/13, and next liver clinic (also to include labs) will be 7/31/13. 

Our transplant coordinator and Dr. Shepherd both expressed full confidence that this PLAN will bring Elise's liver panel back down to normal, and we can all be happy and calm again.  

I"m always calm, cool, and collected though, so we have that much already in the bag!!  

Rockin' Liverland

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

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

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

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

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

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

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

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

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

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

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

"Normal Kid Stuff"

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

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

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

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

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

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

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

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

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

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

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