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!!
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