Addison’s Story

Site created on September 4, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Keelyn Krill

It has been 2 weeks since out of Childrens Hospital.  It is hard to believe.  At times it feels like a year ago and at time it feels like yesterday.  Addison has returned to school part time.  She has such a strong head and steadfast desire to get back to her normal life.  It is really tough though.  Missing so much school, a constant awareness of her physical wellbeing, and trying to overcome the emotional challenges that this trauma has inflicted.  Yet, she amazes us everyday.  Her team is doing fantastic this season and she has been strong on the bench cheering for her high school teammates and friends.  She will be stronger, wiser, and ready to persevere through all challenges life throws her way.  Everyday is a blessing to have our sweet girl with us.  It is a miracle that her event happened when it did, where it did, and that we were able to respond as trained.  It is something that I thank God for everyday.
Yesterday was our 2 week follow up with Dr. Dalal, Cardiologist :
Addison:  They tested her ICD (Defibrillator/Pacemaker).  It was an experience... they put a device that looked like a computer mouse over her heart and manipulated her heart rate an tested the battery, etc.  They manually paced her heart up to 90bpm and back to 40bpm.  It was a very interesting experience.  At times they tested the alarms....we could hear beeping and various alarms coming from inside her body that would alert us to issues regarding battery, too close to a magnet, and other complications that could happen.  Everything checked out just fine with the ICD.  She then had an X-Ray to ensure that the ICD was still in the correct position and has not shifted... waiting for those results but not anticipating any issues.  Next was her EKG...It showed that she still has a severely prolonged QT interval.  Validation that she has the disease and very thankful we caught it.  She is on 2 medications and has been a champ about taking them and sticking with her 3x/day schedule.  We have worked with her school, teachers, coaches, and friends to set up an Emergency Action Plan if response is needed.  (not really something that we would have imagined needing to discuss).  Her wound from the surgery looks great and will make her all that more courageous and beautiful as she walks through Homecoming Weekend!  Next steps for Addison; she will return to Dr. Dalal in about 4 weeks for another stress test, EKG, XRay, and overall vital check.  At that time we hope she is released to drive and possibly start getting herself back in shape to play vball.  Still looking at the end of the year to be on the court.  
Brytn:  What a sweet angel.  So brave, compassionate, and strong too.  Brytn also saw Dr. Dalal for a follow up.  She has been on meds for 2 weeks and she has suffered a few side effects but the good news is that they are working and she overcame the fear of swallowing pills...... so that is good...!  She had an EKG that showed her QT interval shortened with the meds!  That is great news!  The heart monitor that Brytn wore a couple of weeks ago reflected no issues of arrhythmia.  God is good.  Although her QT has shortened with medication it is still not normal.  Therefore, the doctor would like to increase her meds and conduct an outpatient procedure to put in an internal heart monitor called an implantable loop recorder.  This device will be in Brytn for 3 years and allows the doctor to closely monitor her heart in real time.  Once Brytn gets this implant, heals, and performs well on a follow up stress test and EKG's she will likely be released to her normal activities (volleyball ;))...between 6-8 weeks from now.  
Another critical milestone will be to receive the results of the genetic testing.  We are expecting these within the next 3-4 weeks.  This will further refine, define, and provide course of action for both girls and Todd.  Dr. Dalal still feels confident that both girls will return to their pre-event lifestyle yet the genetics will verify their diagnosis.  
I was texting with a dear friend of mine tonight who just suffered a tragic loss of a young man in her family and I asked her, "What are we supposed to learn from all of this?"  She text back, "Empathy. Forgiveness. To not take a minute for granted.  And sometimes life isn't fair." Yep...Love to all and thank you for your support, laughs, texts, comments on Facebook, cards, games, flowers, food, hugs, looks filled with love, and prayers we can feel but cannot hear.  With the depth of emotion and attention this is taking it is really challenging to keep up with calls, texts, emails, etc.  Both Todd and I are trying to juggle work at the same time.  Please forgive us if we are not responding.  
Love to all,
Keelyn 
Brytn
Addison
Todd

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