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.
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