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

Thursday, January 28, 2010

Last Journal Update

Once again, I find myself apologizing for the lack of posts. It’s not been for a lack of activity, that’s for sure. Keegan’s had his fair share of therapy, doctors’ visits, his monthly breathing treatment, and lab draws. He’s also had his fair share of playing outside in the sunshine, enjoying warmer weather, and even seeing a few of his neighborhood friends he hasn’t seen in awhile. We just haven’t necessarily had the time or energy to sit down at the computer these few weeks.
We’ve changed up our approach to Keegan’s feeding therapy. Due to his improving absorption of his tube-fed formula, we’ve been able to reduce his daily volume by about 2 ounces. It doesn’t change much now, but we’re hoping in time to reduce the volume more and increase his appetite. We’ve been blessed to receive some guidance from our transplant dietician on how to progress with Keegan’s table foods. We still see a very direct correlation between new or increased volume of table foods and Keegan’s tummy troubles. Still, it hasn’t seemed to deter him too much at this point. He’s doing increasingly well with his purees and starting to eat a bit more of the soft solids. In occupational therapy, he’s really enjoying working in the “gym” on his mobility and strength. His speech therapist is a little disappointed that he’s not progressing very quickly, but it will come. He’s making a few more sounds during sessions, and he’s even said “mama” a few times (except not quite to me, yet)!

Keegan’s labs looked pretty good this past week, for him at least. All except his immunosuppressant levels. That sure led us on a wild goose chase! 9 sticks, lots of blood, too many tears, and three sets of labs. Needless to say, Gray and I are renewing our fight for a new central line for Keegan. We also had an interesting week with his g-tube. Last Tuesday, Keegan managed to pull the feeding extension clear out of his button when he was supposed to be going to sleep. This ended in stomach contents everywhere, and I sure do mean everywhere. We had to have the crib skirt and carpet professionally cleaned, wipe down walls, clorox the crib, wash too many sheets. Then sometime between Tuesday and Friday, that extension kept leaking. No one figured that out until we ended up in emergency radiology for a dye study. Never a dull moment in this household!

This should be our last post to this journal. We are hoping to transition to the new blog by the end of the week, whether it’s completely finished or not. This web address will default to the donation page. If you’re on Keegan’s email notification list or follow us on Twitter, you’ll receive notice when we’ve made the switch. If not, there will be a link on the remaining COTA donation page. And another note about the email list, the new blog will have a function that automatically sends email notification when updates are posted. To sign up, be sure to fill out the subscription form on the new blog. We also posted one more set of pictures and a new video to tide y’all over for now!

Thank you so very, very much for your prayers and support!! We just can’t explain how much it means to us. If you don’t mind, we’d really appreciate you praying once again for our little friends Avery and Carter, both inpatient yet again. Avery has been fighting RSV and Carter, a line infection. I know their families would love your prayers to help them both get home soon. Thanks again, and take care. See you on the new blog!!

Thursday, January 7, 2010

Update

Every night, I think "I really should post an update on Keegan's journal", and then I think I just don't have the energy to hash everything out again. Don't get me wrong here, it's not that I don't want to journal for all the reasons I've mentioned before. Still, sometimes it can be just a bit overwhelming to put it all out there in writing...again. Which of course means longer posts when I do write. Besides the fact that each post requires writing here, posting pictures on another site, switching email accounts, sending an update email, going back to my email to make sure it sent, sending a twitter update, yadda yadda yadda. BUT soon all that technical tediousness should be a thing of the past! We will be switching to a new blog hopefully within the next two weeks. We've got it mostly up and running, and now, a lovely blog designer is "prettying it up" for us. Stay tuned because we are extremely excited about this big move!

The new blog will be able to have posts and pictures in one tidy little place. There will even be automatic emails sent out with each update to those of you who choose that option, not ones sent out by yours truly. However, we're making this change first and foremost because COTA initially gives you two years to meet your fundraising goals, during which time you must use only their website. After those first two years, you are asked to use a different blogging platform. This does NOT mean Keegan's COTA account will be closed! On the contrary, it will remain open and active for the remainder of his lifetime. The online donation page will remain active, as will comapny matching, direct donations, etc. COTA just generally tries to focus fundraising during the first two years. As you can see by clicking on the "donate" tab above, we have met 75% of our initial fundraising goal of $50,000. And friends, let me guarantee you that every single penny of that (and more at times, thanks to amazing COTA) has gone directly to Keegan's transplant-related medical expenses and absolutely nothing else. Additionally, every penny raised for Keegan has allowed COTA to care for other families in need during their child's transplant. We are completely in awe of your continued generosity, love, support, and prayers for our Bug. I know it's been said a million times, but it's so true. We are blessed beyond measure by each of you.

Keegan is doing well. Most of our week is now taken up by feeding, occupational, and speech therapy, with generally at least one doctor or hospital visit per week. Keegan began more structured speech therapy at Baylor this week, so we are excited to see where that takes him. On the feeding front, we have taken a slightly new direction. About three weeks ago if you remember, Keegan's intestinal problems got very bad, and he stopped eating all together for awhile. His formula was his sole source of nutrition, and low and behold, he started having normal (NORMAL!!) diapers after a few days on only his tube feeds of formula only. Once he felt better and started eating again (his entire repetoire consists of cracker-like carbs, yogurt melts, and some stage 1 baby foods), his intestinal issues went back to the way they were. After talking this over with our GI doctor, we finally have a diagnosis for Keegan! The doctor said these new symptoms were the hallmark of a "functional short gut", or someone whose GI system acts like one without sufficient length of intestines. Basically, you have SO much intestinal tract (20-25 feet normally) because it takes food that long to be properly broken down and absorbed, especially fats. Just like someone without proper length, Keegan dumps what is too difficult for him to absorb.

You may be asking why we haven't been able to have this official diagnosis before now. Good question. It has taken 9 months for Keegan's system to heal enough to even be able to properly digest and absorb his specialty formula (ironically, or perhaps fortuituously, he's already on a formula designed for short-gut patients, thanks to our genius team in Boston). Now that he is digesting this formula, it is clear that this is the appropriate diagnosis. What does it all mean though? Not much, just peace of mind. He's already on the proper formula and has the g-tube for support. If it took 9 months to adapt to the formula, you can imagine it will be a long process to adapt to breaking down normal foods. The doctor said that most true short-gut kids are off the g-tube as a source of main nutrition and eating somewhat normally by the age of 5 or 6. This surely gives us hope and some reasonable expectations. As for a reason Keegan's intestines failed? Your guess is as good as anyone's, but it was likely from oxygen deprivation to the organs during his initial surgeries, ECMO, and post-transplant period. If this means Keegan's still eating stage 1 baby foods on his 3rd birthday, so be it. God has Keegan's future firmly in his grasp, and we will continue trusting in Him.

As for the other news many of your have been asking about, our new baby GIRL is doing well so far. That's right, Keegan's going to have a little sister. We saw our perinatologist on Monday to get our first look at her heart, and so far, so good. Four chambers, input/output tracts look ok at this point. All other organs and measurements are good too. We will see a cardiologist beginning next month to have more detailed echos as her heart forms and is more visible. I'm almost 17 weeks now, and my due date is currently June 20, Father's Day. If she's anything like her older brother though, she'll be early. And to answer your next question, yes, we are pretty certain of her name - Audrey Moyer Harrison. It's not set in stone yet, and I'll save the explanation for another post. Meanwhile, thank you so, so much for your continued prayers for all four of us.

I try to end most of my posts with something a little more insightful. Sometimes for y'all, but usually for me. After putting all our troubles (and praises!) in writing, I'm usually in need of a little spiritual pep-talk, so I figure you might be too. But the truth is I'm weary. I'm plumb tired - mentally, emotionally, spiritually, physically. A good lot of the time, I get through the day without thinking about how different our life is, how unfair it can seem sometimes; it just is the way it is. But with a new baby on the way, it changes things. I worry too much about things I can't change. Today, I watched Keegan sleeping, and I thought of how much I still think of him as a baby, as fragile. But he is one of the strongest people I've ever met, even at 2 years old. I wonder if I'll get to see him grow up, if I'll ever have that moment of realizing my son's no longer a child. Things moms really shouldn't have to think about. And it makes me tired. That's when I have to really struggle to conciously be aware of and grateful for God's redeeming love for me, for each of us. He came so that we might be given new life, so that our burdens on earth would not crush us. To suffer with us, as much as for us. Who am I without His love? I am weary, worried, and tired. And that's not who I want to be. Do you?



"Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11:28-30

"Therefore, we do not lose heart. Though outwardly we are wasting away, but inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

Maddie

**NEW PICTURES ARE UP! CLICK HERE TO SEE THEM. THANKS!