Friday, January 29, 2010

Welcome

Welcome to Keegan's new website! Gray and I are excited to continue to share Keegan's story with you and appreciate deeply your continued love and prayers for our family. We have been very blessed by your support through Keegan's many struggles, and we hope the grace and mercy of the Lord will continue to reach many through our son's life. This new blog will consolidate journal updates, pictures, and video in one place. If you have followed Keegan from his previous website, please note that Keegan's account through the Children's Organ Transplant Association is still active! We simply will be using this website for updates in the future.

Keegan Harrison, or "Bug" as he is often called, was born at 6:24am on Wednesday, September 12, 2007, in Plano, Texas. He weighed 5 pounds 5 ounces and was 18 3/4 inches long. Keegan was diagnosed in utero with a congenital heart defect known as Tetralogy of Fallot and was transferred to Children's Medical Center of Dallas (CMCD) immediately after birth. His heart was in much worse condition than predicted, and Dr. Steven Leonard at CMCD began complete surgical repair of Keegan's heart on Thursday, September 13 when he was not quite 24 hours old. After over 10 hours of surgery attended by every cardiothoracic surgeon on staff, the doctors believed the defect had been repaired. However, Keegan's oxygen saturation levels were inexplicably too low. He was placed on ECMO (extracorporeal membrane oxygenation), a form of life support that circulated and oxygenated Keegan's blood for him.

Over the next few days, a large hematoma developed on the ventrical septal wall of Keegan's heart, which severely damaged both ventricles. It became apparent that Keegan would not be able to survive off of ECMO and would need a heart transplant within three weeks, before multiple organ failure set in. After only 48 hours on the transplant list, Keegan received the beautiful, life-saving gift of a new heart. Dr. Kristine Guleserian at CMCD performed the transplant when Keegan was barely 1 week old and weighed about 5 pounds. Keegan is the youngest and smallest heart transplant performed at Children's and in the state of Texas. He is believed to be the smallest heart transplant in the country. We are eternally grateful to Keegan's donor angel, Johnston (below), and his family, Kevin, LaMonica, and little brother Kingsley, for their gracious and loving gift that saved our miracle's life.



Keegan was discharged post-transplant on October 12, 2007, when he was exactly one month old. He spent only four and a half days on the recovery floor after 3 tenuous weeks in the ICU. Apart from a few minor surgeries, he did very well at home until just before his first birthday. Keegan has battled intestinal failure, neutropenia, anemia, and kidney and liver problems continuously since then. It is unknown whether Keegan's initial surgeries, ECMO, and/or transplant are related to these problems. Keegan spent only 21 days at home between October 2008 and May 2009, with his longest time outpatient being approximately 6 days. During this time, he was unable to take food or formula through his intestinal tract and survived on IV nutrition. In March 2009, he was transferred by medical air transport to Children's Hospital of Boston in hope of finding a diagnosis and treatment that would help him live a more normal life at home. After 20 days at Children's Boston, Keegan was discharged on full tube feeds and NO IV nutrition. We remained in Boston for another 5 weeks outpatient and arrived home again at the beginning of May 2009.

Keegan made steady progress from May 2009 until November 2010, with only one inpatient admission in September 2009.  He received a diagnosis of "functional short bowel syndrome" or "functional short gut", meaning his intestines act similarly to those of one who does not have sufficient length of intestines. This makes it very difficult for him to break down and benefit from normal foods. He battles intestinal pain and frequent diarrhea, but he is in feeding therapy so that he maintains and develops the skills necessary to eat as he is able.  In June 2010, Keegan became a big brother when we welcomed our daughter, Audrey.  By the fall of 2010, he was only getting formula feeds through his g-tube at night, eating a fairly normal toddler diet, and was going to "school" at a local church twice a week.  His speech improved enough that he was testing a little less than a year behind.  He graduated out of occupational therapy and tested at or just below his age level for fine and gross motor skills.

The day after Thanksgiving 2010, Keegan went into complete renal (kidney) failure with a condition originally believed to be hemolytic uremic syndrome (HUS) due to tacrolimus, his main immunosuppression medication.  He was on dialysis 24 hours per day for a week but ultimately regained enough function to go home without dialysis just before Christmas.  Keegan already lost the function of one of his kidneys as an infant when he went into acute renal failure post-transplant.  Testing in February showed that he has only 55% remaining kidney function.  We are anticipating additional testing in the near future to determine if his renal function is stable or declining, and if so, at what rate.  Keegan won't be considered in end stage renal failure until he reaches 35% function, at which time we will have to determine if he is a candidate for a kidney transplant.

While Keegan's kidneys recovered from this trauma, many other aspects of his health did not, especially his GI tract which required him to be completely IV nutrition (TPN) dependent.  He had many ups and downs throughout the beginning of 2011, including a flu scare, rotavirus, and a port that was misplaced into his subclavian artery.  In May, he started spiking high fevers on a weekly basis.  Keegan underwent an extremely risky surgery at the end of May to remove the port from his artery and also suffered from the beginning stages of humoral rejection of his heart.

When the fevers had continued into August, we once again returned to Children's Hospital of Boston for a second opinion.  In mid-September, Keegan suffered a cytokine storm from either hemophagocytic lymphohistiocytosis (HLH) or macrophage activation syndrome (MAS).  We are not quite sure which or what is causing this, either a genetic mutation or a generalized immune dysfunction.  It is now believed that many of the problems and conditions Keegan has struggled with since birth (cytopenias, intestinal failure, kidney & liver problems, etc) are related to the HLH/MAS.  Currently, we know that very large amounts of steroids "calm" his immune system down.  They have lowered the massive amounts of inflammation in his body and reduced the amount of antibodies to his heart.  As we continue to wean the steroids, we will try to find a combination of medications that works to better regulate Keegan's immune system.

In order to keep Keegan doing "well", he must remain very immunosuppressed.  He continues to have coagulopathy, meaning he bleeds and bruises very easily, and he has severe developmental delays from different brain bleeds and injuries.  Despite it all, Keegan is an energetic, happy, and spirited four-year-old. He loves Curious George, movies, anything with wheels, and playing outside. He has quite the little personality and keeps us laughing daily.

We can never fully express our gratitude to our extensive "family" at Children's Medical Center of Dallas. Keegan truly would not be the "little fiery one" he is today without each and every one of our exceptional surgeons, doctors, nurses, and staff at CMCD. You have become more than Keegan's medical team; you are truly our family and lifelong friends. Our deepest thanks also extend to our amazing doctors, nurses, and friends at Children's Hospital Boston, who brought healing and answers to our Bug throughout the years. You will remain in our prayers and hearts forever, and we wish we were closer for your support and care.

Keegan's fight is far from over. He will remain on immunosuppression medication for the rest of his life and will require constant medical supervision. The cost of Keegan's heart transplant has already exceeded $1,000,000. Keegan's account with the Children's Organ Transplant Association (COTA) helps cover transplant-related expenses only and has been a financial lifeline for our family. Every cent raised goes directly to Keegan's cause and can be used only for transplant-related expenses as specified by COTA. As a 501(c)(3) national charity organization, COTA provides services that are tax-deductible to the fullest extent allowable by law. You may make secure online donations for Keegan by clicking the "Donate Now" button at the top right of the page. For more information on how to make in person donations at any Wells Fargo bank (acct 8786043722), by check directly to COTA, in honor or memory of someone, or company-matched donations, please either email us at keeganharrison@yahoo.com or Judy at COTA, judy@cota.org. We are continually humbled by and overwhelmed with gratitude for the generosity and love shown by so many that has helped us and other transplant families during the most dire times.

Keegan's journey thus far has been journaled on a previous website hosted by COTA. All posts dated before today (from 9/13/07 to 1/28/10) were transferred from that site, and comments are therefore closed on those posts. We apologize for any hyperlinks in old posts that didn't survive the switch! Any pictures predating this post can be seen HERE or by clicking the "old photos" link above. To receive email notifications of new posts, please fill out the box on the right sidebar of the page.

Please check back frequently for updates on Keegan! Again, we are humbled and speechless by the continued outpouring of support, love, and prayers for our little miracle and family. We are truly blessed.



"Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God, but if we love one another, God lives in us, and his love is made complete in us. We know that we live in him and he in us, because he has given to us of his Spirit." 1 John 4:11-13 (NIV)

**Updated October 2011

5 comments:

Susy said...

I love the new site!! I can't wait to read all about your new journeys (hopefully all good journeys) on here! Keeping you all in my prayers!

Mamie and Big Daddy said...

We love the site, and look forward to seeing new photos and read of Keegan's newest adventures! We love you, Bug!

The Millers said...

The new website is fabulous!! We hope to see Keegan soon!

Daisy said...

Love the new blog! Keegan is such a wonderful example of courage! :) Can't wait to follow your postings.

Helene said...

Awesome site and very user-friendly! So glad that we get to follow your life so closely from so far away. Keep up the good fight! Eleanor informed us the other day that, "Baby Keegan will be all better soon. Don't worry." Gotta love positive thinking!