   | TAKE STEPS FOR CROHN'S & COLITIS • 04.20.15 Last April, my family participated in Take Steps for Crohn's and Colitis, an annual walk to raise money for the Crohn's and Colitis Foundation of America (CCFA). At the time, my youngest sister was living with an ostomy after needing surgery to remove her entire colon due to severe ulcerative colitis. What a difference a year makes! Since last year's walk, Corrie has had multiple surgeries to create a makeshift colon (a j-pouch) and spent countless days in the hospital with complication after complication. As of last month (fingers crossed), we'll need to update our team shirts to say "UC didn't beat me." Cue the happy tears. My family has seen first-hand how devastating Crohn's disease and ulcerative colitis can be, and that's why we're participating in Take Steps again this year. Over 1.4 million American adults and children, including BOTH of my sisters, are affected by these digestive diseases, and it would mean so much if you joined us as we "take steps" toward finding a cure... because an actual cure would be so much better than the "hi-there's-no-hope-let's-just-remove-your-organs" cure! For Christmas this past year, Corrie not-so-subtly hinted that she would love some hand-painted canvases for her walls... so I did just that. Using India ink and watercolors, I created canvases with two of her favorite Bible verses: 2 Timothy 4:17 and 1 Corinthians 16:14. As a way to thank those who continue to support my family + the CCFA (and perhaps even as a donation incentive?), I'm giving away a 5x7" print of either canvas (your choice) to anyone who donates $15 or more to the CCFA on behalf of Corrie's Team. If you donate $25 or more, I'll send you an 8x10" print of either canvas. Click HERE to donate. And friends? Thank you for supporting us through the last almost-two years, for learning about Crohn's and colitis alongside us, and for helping us spread awareness. We appreciate you so much – we couldn't have done this journey without you! |
Showing posts with label colitis. Show all posts
Showing posts with label colitis. Show all posts
Take Steps for Crohn's & Colitis
Guest Post: Corrie Haynes // Reflections on October 6th
    | GUEST POST: CORRIE HAYNES // REFLECTIONS ON OCTOBER 6TH • 10.5.14
On the one year anniversary of the day we lost my sister and the day we got her back, Corrie asked to share some thoughts via this space. Xo, baby girl. It's all yours. --- Today brings many emotions for me. The past fourteen months of my life have stretched and pushed me in ways I never imagined. While I’ve been at Appalachian, I have woken up each day reminded of how a year ago, I was in terrible shape with so many unknowns about how my life would go on. However, today is a more special day. One year ago, I coded. Although I can’t remember much, I don’t want to ever relive the chaos that surrounded me while staff tried their hardest to revive me. I am so thankful that they kept trying, and, after fifteen minutes, were able to find a heartbeat. The months to follow were hard, but I truly believe this awful experience has shaped me into who I am today. Being 18 years old at the time and having to use a walker/depend 100% on family for help was beyond humbling. Although 2014 hasn't gone exactly like I hoped, I know that God has something bigger for me. Throughout all of these trials, I am reminded of my favorite verse: 2 Corinthians 12:9–10. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. This past year, I have never felt more weak... or more used by God. Recently, I felt really drawn to apply to the National Council of College Leaders, a part of the the Crohn’s and Colitis Foundation. I would be able to get the word out about this awful disease while interacting with other college students who have been affected. I have been praying for a burning bush as to what my purpose is with my new life, and while I haven’t seen one yet, I am praying that God uses me in the NCCL if I were to get the position. I know that if I am not chosen, God clearly has other plans for me. Currently, I am feeling good. Back in August, I got another abscess and the doctors tried something a little different, which seems to be working. Over my fall break later this month, I will be having a "pouchogram" so the doctors can get a feel for the size and placement of the fistula. Then, over my Christmas break, I will have a fifth surgery – this time to take out the section of intestine with the fistula. With any surgery, there is always a chance that I could get a fistula, but the only way to remove it is with surgery. I am still praying every day that God will heal me so I do not have to endure another surgery. When I look back on this past year, I am amazed at the support and love from so many people. To my parents: thanks for holding my hand and wiping my tears every day. I love you both so much and I couldn’t have gone through all of this without you both. Thanks for sleeping in hospital chairs and floors, and for fighting for me with so many doctors. Thank you for the hours of therapy, both physical and mental. Words honestly can’t express how grateful I am for you and the unconditional love you’ve shown me. To my sisters and brother-in-law: thanks for letting me be the center of attention for the past fourteen months. Thanks for driving to come see me, because your visits meant so much to me. Most importantly, thanks for making me laugh and helping me make good memories throughout the rough times. I love you all so much. To my boyfriend, Carter: thanks for telling me that I was beautiful every single day even when I definitely did not feel like it. Thanks for letting me call you whenever I needed someone to talk to. Thanks for driving four hours to come see me in the hospital or at my home, and being so proud of all the progress I made in between visits. To my roommate, Carter: I’m sure this is not what you envisioned in a college roommate. I appreciate you praying for me, washing my stuff, and buying me food when I do not feel my best. Thank you for being the most understanding person I’ve met. To the UNC Memorial Hospital Staff (shoutout to my 6 East nurses): even though being in a hospital sucks, I could not imagine going through this without you. Everyone has shown such care and love and with a smile. Thank you for helping me get back to “normal.” To anyone else reading this: thank you for taking an interest in my life. I appreciate the genuine concern and care that has poured out from so many. I cannot thank you enough for the cards, flowers, gifts, meals, and most importantly: prayers. It feels so great to know that I have so many people cheering for me. – 2 Timothy 4:17 |
Corrie + Colitis | Surgery #3 + #4
     | CORRIE + COLITIS | SURGERY #3 + #4 • 9.9.14 It's been quite a while since the last thorough "Corrie update" via blog. If you're beginning to get tired of reading about hospitals and surgeries and setbacks, I assure you that we're all getting pretty tired of living it. However, if you'd like to get caught up on everything that has gone on in the past few months, I've tried my best to summarize everything below. When we left off in mid-May, my sister had just been discharged from the hospital following surgery number two and was going to spend the first half of the summer recovering before her third and final surgery in July. And that's sort of what happened. Corrie returned to the hospital early on the morning of July 1 and had her "takedown surgery," as it is referred to in the medical world. Despite the rumors, Corrie did not get a "new colon." She has no colon; she will forevermore have no colon. However, the third surgery made it possible for her digestive system to function as close to normal as possible without a colon. After living for nearly nine months with an ostomy, Corrie was able to say goodbye to stomas and bags and Eakin rings and everything else ostomy-related. The procedure was the shortest and least-invasive of the three, which thankfully led to a shorter-than-usual hospital stay. Corrie was discharged from UNC Memorial Hospital in the late afternoon of July 4 (hence the patriotism oozing in our photos). On Monday, July 28, Corrie had her final post-op appointment and was cleared by her surgeon to finally begin college after putting school (and life, essentially) on hold for a year. Everything checked out fine, and we couldn't have been more thrilled. Just three days later, however, Corrie was rushed to the emergency room with terrible pain in her abdomen. What we initially thought to be something related to her gallbladder (let's see how many organs we can remove in a year!) turned out to be yet another post-surgical abscess just like the one she had in December 2013 following her September 2013 surgery. While these infections/abscesses are rather common, they typically occur in the weeks following the surgery... not one to three months later! On July 31, with fifteen days until Corrie was supposed to begin college, we found ourselves in an all-too-familiar situation. This time, however, the abscesses appeared to be caused by a small fistula. The doctors treated the abscesses with drains and antibiotics while Corrie remained in the hospital for ten days. Determined to make it to her college move-in day, Corrie opted to be discharged with a drain on August 9 and continued antibiotic treatment at home. On August 15, Corrie moved to Boone to begin her freshman year at Appalachian – oh, happy day! She made a whirlwind trip back to Winston-Salem three days later to have the drain pulled before her first day of classes – what we hoped would be her final doctor visit for a very long time. We knew the following months would be "wait and see." If the infection/abscesses did not recur by Thanksgiving, then the fistula would have healed itself and everything would finally be well. However, if the infection/abscesses came back, Corrie would have to undergo yet another surgery to close off the fistula. As life would have it, the infection/abscesses came back in no time at all. Four days later, Corrie was back in the emergency room, and on August 24, she had her fourth surgery in less than a year – not to close off the fistula, but to enlarge her wound site to allow the abscesses to fully drain. This most recent hospital visit lasted four days, and although she had a doctor's note to miss her second week of college, Corrie returned to Boone two days after her surgery, determined to move forward with her freshman year. So here we are – still in "wait and see" mode. Corrie has a follow-up appointment next month to determine what comes next. A fifth surgery? A clear scan? Another month of "wait and see"? All are possibilities, and after everything Corrie has been through, we've learned to brace for the worst and hope for the best. In the meantime, Corrie is settling into college life: making friends, going to football games, and occasionally asking her big sister for help with math homework ;) If you'd like to fill her college mailbox up with love, you can write her at: ASU Box 07250 Boone, NC 28608 Thank you to everyone who has loved on Corrie and my entire family during the last year. Spending over 100 days in a hospital room over the course of thirteen months is exhausting, discouraging, and downright soul-sucking at times, but we're so grateful to those of you who have supported us as Corrie fights through yet another setback. You make the not-so-great days a little bit better, and we're looking forward to celebrating some really great (i.e.: healthy) days with you in the future. Xo. ps: All Corrie + ulcerative colitis-related posts can be found here. |
Corrie + Colitis | Surgery #2
 | CORRIE + COLITIS | SURGERY #2 • 5.12.14 Last Tuesday, May 6, my entire family returned to UNC Hospital in Chapel Hill, North Carolina, for Corrie's second surgery in her fight against ulcerative colitis. The surgery was expected to last 4-5 hours with a hospital stay of one week... and that's exactly what happened! (Nothing about Corrie case has been "typical" over the past nine months, so it was nice—and a bit shocking—to have something go according to plan!) I'm excited to share that Corrie was discharged from the hospital this afternoon and is already back at my parents' home in Winston-Salem. Here are a few snapshots from Corrie's most recent hospital trip... nothing fancy, all taken on cell phones. I love how they reflect the support and closeness of our entire family. We've gained a bit of a reputation at the hospital throughout everything Corrie has been through: the nursing staff made sure to reserve one of the larger rooms for Corrie to stay in and brought in extra chairs before we even arrived. They know that both of my parents spend the night in her room, and that my other sister, Katherine, temporarily moves into my apartment (about 30 miles away) so we can all visit from sunup to sundown every day. If one of us is staying at the hospital, we're all staying at the hospital. While it was great to catch up with so many of the nurses and doctors who have become part of our family, we're so glad this hospital stay was much shorter and rather uneventful. The procedure that Corrie had done means, of course, a painful recovery over the next few weeks, but seeing as how she walked over half a mile throughout the hospital hallways the day after her surgery, we have no doubt that she'll be back to 100% in no time. Sister is tough. Thank you to everyone who has remembered Corrie and the rest of my family during this time. We're always overwhelmed by the community who rallies around us, and we're so grateful for your continued love and support as my sister focuses on recovering for her third—and final—surgery this summer. |
Take Steps for Crohn's & Colitis, Part II
    | TAKE STEPS FOR CROHN'S AND COLITIS, PART II • 4.27.14 I mentioned last week that my family and I would be participating in Take Steps for Crohn's and Colitis, the Crohn's and Colitis Foundation of America’s largest fundraising event for the more than 1.4 million American adults and children affected by Crohn's disease and ulcerative colitis. Yesterday, we did just that! While these events happen across the nation, my youngest sister, Corrie, requested that we all participate in this year's walk in Raleigh. It's always great when my entire family is able to spend time together, but it's even better on the rare occasions when they make the 100+ mile drive to our area of the state! The weather couldn't have been more perfect as we walked throughout North Carolina State University's Centennial Campus, and although I was disappointed that we weren't able to raise more money to support the efforts being made to find a cure for these chronic diseases, I know that so many people have gone above and beyond to support my family throughout Corrie's hospitalizations and continued recovery. A huge thank you to those of you who donated to the CCFA on behalf of Team Corrie this year! The "honored hero" at yesterday's walk was an elementary school-aged boy with Crohn's disease who has to receive treatment through an NG tube four nights a week. He had the opportunity to speak before the walk began and talked about his hopes to see a cure for Crohn's and colitis. My favorite line from his speech? "I don't want to be out here walking when I'm 20, or 30, or 40." Me neither, buddy. Me neither. Here's to hoping for a cure. In the meantime, here's to raising awareness about these chronic diseases that affect 1 in 200 people across the nation. |
Take Steps for Crohn's & Colitis, Part I
 | TAKE STEPS FOR CROHN'S AND COLITIS, PART 1 • 4.23.14 When my youngest sister was taken to UNC Hospital last September to have her colon removed, we knew her surgery would be a three-step process. The first portion was to simply remove the colon. Ulcerative colitis caused her immune system to mistake food and good bacteria (that helps with digestion) in her intestine for harmful/invading substances... so her colon was essentially attacking itself. Unfortunately, her symptoms did not get better after being treated with various immune system suppressors, so removing her colon was the only option. Step one... done. The original plan was to have the second surgery in November and the third surgery in December (with the possibility of being able to start college in January... oh, how little we knew!). As you all know, first this happened, which obviously pushed everything back, and then an additional hospitalization at the end of December/beginning of January pushed things back even further. In my last colitis-related blog post, Corrie's second surgery had been set for May, assuming no more setbacks came her way. Good news, y'all: Corrie came to Chapel Hill earlier this week for a pre-surgery scan and everything is still clear! She will have her second surgery to essentially begin constructing a makeshift colon out of her small intestine on May 6... in less than two weeks! HOWEVER, just ten days before she goes back to the operating room (aka, THIS Saturday), Corrie and the rest of my family will be participating in the Triangle Take Steps for Crohn's and Colitis Walk, an afternoon to raise awareness for Crohn's disease and ulcerative colitis, as well as a fundraiser to support research in hopes of finding a cure. After Corrie's diagnosis, we were surprised to learn that almost everybody knows somebody who is struggling with Crohn's or colitis: a spouse, a sibling, a friend, a co-worker. After seeing firsthand the challenges of living with these chronic diseases, my family is excited for the opportunity to make a difference in the lives of others who continue to fight. So many of you have supported us throughout the past 8+ months in more ways than we could have ever imagined, but if you would like to make a donation to the Crohn's and Colitis Foundation of America in honor of Corrie, or in honor of anyone else you know who is affected, you can do so here. I've learned a ton about Crohn's and colitis during the last year, and while this hardly scratches the surface, I'd love to share a bit with you. Knowledge is power, right? :) If you are interested in learning more about Crohn's and colitis, visit the Crohn's and Colitis Foundation of America. Learn more about just Crohn's disease here or just ulcerative colitis here. Thank you for supporting my family as we participate in Triangle Take Steps for Crohn's and Colitis, and thank you for thinking of us as Corrie prepares for her second surgery on May 6. I'll be sure to keep everyone updated, so check back often! |
Corrie + Colitis | The Journey Continues
  | CORRIE + COLITIS | THE JOURNEY CONTINUES • 2.23.14 Those of you who know my family and/or have been reading this blog for a while are aware that my youngest sister, Corrie, has spent the past 6+ months with major health issues: going in and out of the hospital for extended periods of time, constantly having scans and scopes and all other sorts of tests, and dealing with almost every possible medical complication along the way. We haven't shared every single update during that time, simply because that would've meant about 4893 updates that all seem to contradict each other. Corrie's condition and the doctors' opinions are constantly changing, and the latest developments in her case are bound to be old news in 24 hours. It would be crazy to drag everyone along on the seemingly never-ending roller coaster of "this is the diagnosis and the treatment" immediately followed by "just kidding, this is the diagnosis and the treatment." BUT (cross your fingers), things seem to be rather stable at the moment. In fact, there haven't been any changes to the current situation in four days, which might just be a record. Everyone loves a good lull on a roller coaster after six months of whiplash-inducing ups and downs. Ulcerative colitis is incredibly similar to Crohn's disease. (Colitis affects just the colon, while Crohn's disease can affect any part of the digestive tract... including the colon.) There isn't a simple test to confirm the diagnosis; instead, a team of people with medical degrees analyze each case and make a determination. Of course, if problems persist in areas other than the colon, it's easy to rule out colitis and diagnose a patient with Crohn's. However, if the problems persist only in the colon (like in Corrie's case), making a diagnosis is more difficult, since it could still be either one. With me so far? There were aspects of Corrie's condition that pointed to colitis, aspects of her condition that pointed to Crohn's, and aspects of her condition that could go either way. After removing her colon (and appendix) last September, the doctors made the decision to go with colitis. Since colitis only affects the colon and Corrie had her colon removed... a diagnosis of colitis meant that Corrie was essentially "cured." (There is no cure for Crohn's disease... only the possibility of remission with treatment/medication.) Of course there was still a long road to recovery, but colitis meant she wouldn't have to deal with hospitals and medication for the rest of her life. While recovering from surgery last fall, Corrie developed a few infection-filled abscesses in her abdomen. Most individuals with medical knowledge say that this is rather common after major abdominal surgery, and if it weren't for those abscesses, Corrie wouldn't have still been in the hospital when she coded, so we'll file that under "blessing in disguise." Corrie had a few drains inserted into her abdomen to remove the infection and was well on her way to recovery when she was discharged from the hospital last October. However, the abscesses returned the day after Christmas and Corrie spent the end of December and first week of January back in the hospital. There was a very small chance the initial abscesses were never 100% cleared up and just got reinfected. However, the doctors felt there was a much better chance that the abscesses were a result of inflammation or even a small tear in her small intestine... which led them to consider the possibility of a Crohn's diagnosis. Still with me? Crohn's meant long-term medication. Crohn's meant surgery to turn a temporary ostomy into a permanent ostomy. Crohn's meant the disease that took my sister's colon was attacking (and would continue to attack) other parts of her digestive tract. Crohn's meant my almost-19-year-old sister would deal with more complications and hospital trips during future flare-ups for the rest of her life. And most of the doctors were pretty convinced that Crohn's disease was the new diagnosis. Nothing could be definite, however, until the abscesses were completely cleared up and the doctors could perform another scan. If the scan showed any fluid or inflammation (or tears) in her small intestines, Corrie would be diagnosed with Crohn's. So the wait began. And finally, this past week, Corrie went in for her scan, determined to prove all the doctors wrong... ...and she did! Corrie's scan showed that her small intestines are 100% clear - absolutely no fluid or inflammation to be found. The doctors have told us that it is impossible to have Crohn's with such a perfectly clear scan, so (in their words) Corrie either (1) had ulcerative colitis all along and the most recent abscesses were just a bizarre complication from her surgery more than three months prior, or (2) she is a picture of the power of prayer, because she actually did have Crohn's and simply doesn't anymore. Either way, this means that Corrie will have surgery in May to "reverse" everything! The doctors will take a portion of her small intestine and form it into a pouch, and that portion of her small intestine will function as (and actually begin to take on characteristics of) her colon. This entire procedure will allow her digestive tract to work normally, and we'll all say goodbye to her ostomy. Thank you to everyone who has asked about Corrie and prayed for my family during this time. As always, there's still a long way to go, but we're excited to celebrate such good news with all of you :) |
Corrie's Riff Off
The very first people to show up to the hospital on the night my sister (Corrie) coded were a couple of my other sister's (Katherine's) friends/suitemates from High Point University. After receiving the call that Corrie's heart had stopped beating and she was rushed to ICU, these girls hopped in a car and drove for more than an hour to be with my family. They sat with us during the emotional roller coaster that followed that evening as doctors tried to determined exactly what happened, if emergency surgery was necessary, if there was any permanent damage, etc. They hugged us and cried with us (and raided vending machines for us). Most of all, they were simply there. Their presence meant we were not physically alone in that bleak family consultation room and reminded us of the overwhelming support from such a large community who loved Corrie and my family.
But they didn't stop there. They wanted to do more, and after returning to High Point University, they began brainstorming ideas to do just that.
While Corrie was recovering in ICU, Katherine's friends started planning Corrie's Riff Off, an a cappella competition/fundraiser to cover some of Corrie's medical bills as well as a night for the community to come together and celebrate Corrie. The event is scheduled for next Saturday, January 25, at the Hayworth Fine Arts Center on the campus of High Point University. Currently, a cappella groups from Appalachian State University, High Point University, North Carolina State University, and the University of North Carolina (Chapel Hill) are scheduled to perform... and we would love for you to come!
If you like music (particularly a cappella... swoon!) and/or you like Corrie, here is the best way to get tickets for the event:
- Click HERE to go to the Corrie's Riff Off Fundly page.
- Click the "Make a Donation" button in the right-hand sidebar.
- Fill out your information in the box that appears and make a donation of $7 per ticket you wish to purchase.
- In the box that says "Add A Message To Your Donation," type "TICKETS." (Please specify how many tickets, especially if your donation exceeds the $7 per ticket minimum.)
That's it! Your tickets will be waiting for you at the Hayworth Fine Arts Center when you arrive on January 25.
While we would love for everyone who has supported our family on this journey to be able to attend Corrie's Riff Off, we know that many of you are scattered throughout the country and can't travel to High Point for the weekend. If you still want to get involved, you can make a donation here.
---
A quick update on Corrie (because I know you're all going to ask!): As of today, my 18-year-old sister has spent 77 of the past 152 days in the hospital with a diagnosis of ulcerative colitis – a disease that affects the colon. (Read more here about her first two hospital stays – a combined 66 days that resulted in major surgery to remove her colon and a pulmonary embolism that caused her to have a heart attack). After her grand return to Winston-Salem at the end of October, she was readmitted to the hospital (her third stay) from December 29 through January 8.
Corrie is currently at home and recovering well, but at this point, we are waiting to see if the complications that triggered her most recent hospital trip were related to complications from the initial surgery to remove her colon or the result of a slightly-different diagnosis. She has follow-up appointments in the upcoming week with the hospital in Winston-Salem and the hospital in Chapel Hill, but it will take a while before we know anything conclusive and how it affects the additional surger(y/ies) scheduled for this year.
Thanks so much for thinking of her and my family during this time. We are so excited about Corrie's Riff Off and hope to see all of you there!
Welcome Home, Corrie
Exactly four weeks ago, after sixty consecutive days in the hospital, Corrie was released from the hospital in Chapel Hill and came home to dear ol' Winston-Salem!
Corrie's official "I'm going home!" Instagram photo
My sister Katherine had gone back to Winston-Salem the night before so she could spend the morning making sure that everything was ready for Corrie's return to my parents' house. Although it was much needed, it seemed weird not having all six of us together in the hospital on the final day, especially considering that we'd been through everything together up to that point. As Zach and I got ready to make our final trip to the hospital in Chapel Hill on Monday morning, I asked him if he still had his little digital camera that he took to Afghanistan. Since it has video-recording capabilities (and my DSLR does not), I figured I'd take a few short clips as Corrie's hospital journey came to an end so Katherine wouldn't miss out on anything.
My "few short clips" for Katherine's benefit turned into a little YouTube video that's been viewed nearly 1,600 times and counting:
*The music in the video is composed and performed by Jon Wilson, an incredibly talented musician with a huge heart for God and others. My family has come to know Jon through Camp Bethel and the Virlina District over the years, and we were so touched when Jon wrote this song for Corrie while she was in ICU.
**You can hear me burst into sobs at the 1:59 mark. If the audio was included at the 0:55 mark instead of just music, you could hear me burst into sobs again as well. While we're making disclaimers, I'm sorry for having a dirty car windshield.
I can't tell you how glad I am that my family now has this video to chronicle one of the happiest days of our lives. Corrie's story could have ended so differently, and being able to bring her home and watch her walk up our sidewalk was a dream come true and an answer to so many prayers.
We knew going into the weekend that Corrie would most likely be discharged from the hospital on Monday, but after encountering five billion setbacks and complications, my family decided not to tell anyone until the news was absolutely certain. Our extended family and neighbors only had a few hours' notice, but they managed to change the church sign in Corrie' honor, have balloons tied to every mailbox lining the street, and have all sorts of "Praise God" and "Almost There" and "Welcome Home, Corrie" signs posted all the way down the road.
It was so important to Corrie to walk up the sidewalk into my parents' house, and with the help of a walker and my parents by her side (and a tiara, of course), the princess did just that.
Let it be known that although Corrie was never the biggest fan of the family cat, her true feelings came out while she was heavily medicated in the hospital... and she apparently loves the furball. Callie apparently loves her right back, since the only night she didn't eat her dinner while my family was in Chapel Hill was the night that Corrie coded and was rushed to ICU. Purrface knows what's up.
---
Since coming home from the hospital, Corrie has continued to amaze us each day with her strength and positive attitude. Less than four weeks ago, she was able to walk ~350 feet while using a walker. Now she's able to walk ten times further (2/3 of a mile) with no walker at all. In fact, the walker has been banished to the basement as of this past weekend! Corrie has physical therapy every day as she continues to get her strength back and works out with my dad throughout the day as well. (He's been able to use his stored-up vacation days to stay at home with Corrie during the past month, which has been such a blessing.)
In addition to rebuilding her strength after nearly three months of being sick, Corrie is also learning to navigate life without a colon. We've learned that there are some foods which are supposedly off-limits for anyone without a colon (ie: nuts, seeds, carbonation, raw vegetables, skins/peels of fruits, etc.), but a lot of other foods vary from person to person. It's a little bit of trial and error learning what works best and managing the pain that comes along with it.
Corrie continues to take a blood thinner medication (no more blood clots, ever, please!) and frequently has her INR levels tested. She has follow-up appointments next month with both the cardiologist and the surgeon at the hospital in Chapel Hill. The second surgery will probably take place next spring/summer, but for now, we're all just taking things one day at a time.
Life most certainly isn't back to normal in the Haynes house and more than likely won't be back to normal for quite a while. However, the entire family – Corrie especially – is embracing our "new normal." Shopping trips and restaurant outings look a little different these days, but what a blessing that we're still able to enjoy all of it as a family!
photos via @k_haynes and @corrie_anna on Instagram
Lastly, I couldn't possibly share this post without thanking everyone who has loved and supported my family during the past few months through their prayers, phone calls, emails, texts, food, gifts, Lovenox-shot-giving capabilities, and more. Corrie still has a ways to go, but goodness, how far she has come! To those of you who mailed cards after reading this post while Corrie was in ICU, this is just a fraction of your labor of love (I ran out of room to keep displaying them, obviously):
Cards poured in from all over the globe. There were so many cards from family, friends, co-workers, and former classmates... as well as SO many cards that started off with, "You don't know me, but..." There were cards from elementary school classes, cards from churches we don't attend, cards from people we've never met. Funny cards, encouraging cards, sentimental cards, handmade cards. There aren't words to thank you for the amount of smiles you brought to Corrie's face as well as the amount of love you brought to ICU, ISCU, and 6 East.
Each of you made this journey a little brighter. We are so grateful for your love and support that helped get our family to where we are today, and we appreciate your prayers as Corrie continues to get stronger.
My sister Katherine had gone back to Winston-Salem the night before so she could spend the morning making sure that everything was ready for Corrie's return to my parents' house. Although it was much needed, it seemed weird not having all six of us together in the hospital on the final day, especially considering that we'd been through everything together up to that point. As Zach and I got ready to make our final trip to the hospital in Chapel Hill on Monday morning, I asked him if he still had his little digital camera that he took to Afghanistan. Since it has video-recording capabilities (and my DSLR does not), I figured I'd take a few short clips as Corrie's hospital journey came to an end so Katherine wouldn't miss out on anything.
My "few short clips" for Katherine's benefit turned into a little YouTube video that's been viewed nearly 1,600 times and counting:
*The music in the video is composed and performed by Jon Wilson, an incredibly talented musician with a huge heart for God and others. My family has come to know Jon through Camp Bethel and the Virlina District over the years, and we were so touched when Jon wrote this song for Corrie while she was in ICU.
**You can hear me burst into sobs at the 1:59 mark. If the audio was included at the 0:55 mark instead of just music, you could hear me burst into sobs again as well. While we're making disclaimers, I'm sorry for having a dirty car windshield.
I can't tell you how glad I am that my family now has this video to chronicle one of the happiest days of our lives. Corrie's story could have ended so differently, and being able to bring her home and watch her walk up our sidewalk was a dream come true and an answer to so many prayers.
We knew going into the weekend that Corrie would most likely be discharged from the hospital on Monday, but after encountering five billion setbacks and complications, my family decided not to tell anyone until the news was absolutely certain. Our extended family and neighbors only had a few hours' notice, but they managed to change the church sign in Corrie' honor, have balloons tied to every mailbox lining the street, and have all sorts of "Praise God" and "Almost There" and "Welcome Home, Corrie" signs posted all the way down the road.
It was so important to Corrie to walk up the sidewalk into my parents' house, and with the help of a walker and my parents by her side (and a tiara, of course), the princess did just that.
Let it be known that although Corrie was never the biggest fan of the family cat, her true feelings came out while she was heavily medicated in the hospital... and she apparently loves the furball. Callie apparently loves her right back, since the only night she didn't eat her dinner while my family was in Chapel Hill was the night that Corrie coded and was rushed to ICU. Purrface knows what's up.
---
Since coming home from the hospital, Corrie has continued to amaze us each day with her strength and positive attitude. Less than four weeks ago, she was able to walk ~350 feet while using a walker. Now she's able to walk ten times further (2/3 of a mile) with no walker at all. In fact, the walker has been banished to the basement as of this past weekend! Corrie has physical therapy every day as she continues to get her strength back and works out with my dad throughout the day as well. (He's been able to use his stored-up vacation days to stay at home with Corrie during the past month, which has been such a blessing.)
In addition to rebuilding her strength after nearly three months of being sick, Corrie is also learning to navigate life without a colon. We've learned that there are some foods which are supposedly off-limits for anyone without a colon (ie: nuts, seeds, carbonation, raw vegetables, skins/peels of fruits, etc.), but a lot of other foods vary from person to person. It's a little bit of trial and error learning what works best and managing the pain that comes along with it.
Corrie continues to take a blood thinner medication (no more blood clots, ever, please!) and frequently has her INR levels tested. She has follow-up appointments next month with both the cardiologist and the surgeon at the hospital in Chapel Hill. The second surgery will probably take place next spring/summer, but for now, we're all just taking things one day at a time.
Life most certainly isn't back to normal in the Haynes house and more than likely won't be back to normal for quite a while. However, the entire family – Corrie especially – is embracing our "new normal." Shopping trips and restaurant outings look a little different these days, but what a blessing that we're still able to enjoy all of it as a family!
Lastly, I couldn't possibly share this post without thanking everyone who has loved and supported my family during the past few months through their prayers, phone calls, emails, texts, food, gifts, Lovenox-shot-giving capabilities, and more. Corrie still has a ways to go, but goodness, how far she has come! To those of you who mailed cards after reading this post while Corrie was in ICU, this is just a fraction of your labor of love (I ran out of room to keep displaying them, obviously):
Cards poured in from all over the globe. There were so many cards from family, friends, co-workers, and former classmates... as well as SO many cards that started off with, "You don't know me, but..." There were cards from elementary school classes, cards from churches we don't attend, cards from people we've never met. Funny cards, encouraging cards, sentimental cards, handmade cards. There aren't words to thank you for the amount of smiles you brought to Corrie's face as well as the amount of love you brought to ICU, ISCU, and 6 East.
Each of you made this journey a little brighter. We are so grateful for your love and support that helped get our family to where we are today, and we appreciate your prayers as Corrie continues to get stronger.
Corrie: it may have taken eighteen years, but the whole world finally knows how to spell your name.
You are so loved, baby girl!
Corrie + Colitis | The Hospital Journey
              All of the nurses in ICU were absolute angels! The one pictured on the left bought Corrie a tiara to wear during her move from ICU to ISCU.     Corrie's nurse the day she coded got to be her nurse again for a day once Corrie returned to a regular room. Happy tears all around!   | CORRIE + COLITIS | THE HOSPITAL JOURNEY • 11.21.13 So many people have told me that they keep coming back to this poor, neglected blog of mine for updates on Corrie, but no such luck. (Sorry!) Fortunately, there are lots of happy updates to be shared, but I couldn't possibly write about where we are now without taking a moment to reflect on where we've been. I didn't write a lot about Corrie's illness in the early days, simply because I had no idea it would turn into the journey that it has. We found out earlier this year that Corrie has ulcerative colitis, a disease that affects the colon. This disease is believed to have a genetic component, and in our family's case, my other sister (Katherine) received the same diagnosis when she was in high school. Katherine's diagnosis has never required hospitalization and is manageable with daily medication, so we were unaware of how severe the disease could be. After everything Corrie has been through, she now affectionately refers to Katherine's case as "baby colitis." Corrie had a flare-up during the first week of August (just days before our family beach trip) - something we attributed to food poisoning or something of the sort. However, she stayed sick during our time at the beach (note how she's only in one photo), so my parents made her an appointment with the doctor when we got back. The following recap is a grand combination of text message archives and Facebook statuses forever compiled into one place as a mini-synopsis of Corrie's journey. --- August 16 (the day Corrie was supposed to move into her dorm to begin her freshman year of college): the doctor sent her immediately to the hospital where it was confirmed that her case of ulcerative colitis was classified as "severe" and required immediate medical treatment. August 21: After six days, Corrie headed home... still not completely healthy, but under the assumption that she was on the road to recovery as the medicine would continue to fight the disease. She would miss her first week of college classes, but as someone who lived for "drop/add" period, I'm not sure if I ever attended the first week of the classes that I ended up enrolling in and I turned out just fine, so no harm there ;) August 30: A little over a week later, however, Corrie's condition continued to worsen. She was readmitted to the hospital in Winston-Salem and began receiving a second type of medical treatment, as her body clearly was not responding to the first. Overall, Corrie spent 29 days in Forsyth Hospital (6 on her first visit and 23 on her second). We did a lot more than sleep during that time (ie: complete every Sudoku and crossword puzzle known to mankind as well as check out potential doctors for Katherine to date), but family sleeping pictures are infinitely cuter. As are the Ryan Gosling pictures I would send to Corrie during the week from Raleigh: Classic, I know. September 21: A scope revealed that Corrie's body was not responding to the second treatment either, and if she remained in the hospital in Winston-Salem, the only option left was surgery to remove her colon. However, the hospital in Chapel Hill (~80 miles east) is one of the top facilities in the Southeast for gastroenterology and had a couple of other treatment options. Obviously wanting to avoid surgery if possible, my family made the decision to transport Corrie to Chapel Hill that night. September 22: After being evaluated, the doctors informed us that Corrie was not a candidate for the possible medical treatment, as it would take twelve weeks before showing signs of relief (assuming it worked at all). Her colon was so diseased by this point that she barely had twelve hours. Surgery was scheduled for the following day. September 23: Corrie had her first surgery (it is a two- or three-surgery process over the span of months) to remove her colon. The surgeon told our family that when he placed the surgical tool on her colon to prepare for the cut, her colon actually fell apart without him making the incision! Following surgery, Corrie was taken to a regular room on the gastroenterology floor, where she was expected to stay for five to seven days. September 26: Corrie began feeling very nauseous. The doctors initially thought it was a reaction to the pain medication, but switching to a different type didn't bring much relief. September 27: Corrie's fever spiked over 101 and an x-ray showed that she had pneumonia. She began receiving IV antibiotics. Nausea became her biggest obstacle to overcome, as eating and walking were essential for her body to heal, but both were difficult as long as she felt sick to her stomach. September 29: A CT scan revealed the source of the nausea to be a fluid/infection-filled abscess in Corrie's abdominal cavity. A procedure to drain the abscess was scheduled for the following day. September 30: Corrie had a procedure to insert two drains into her abdominal cavity that would drain out the fluid/infection-filled abscess over the span of a week or two. October 2-3: Corrie's fever spiked to 102 and the nausea returned. The doctor believed that some of the infection released into her body when they drained her abscess, but still felt like going home by ~October 7th was possible. October 4: Because she hadn't quite encountered every post-surgery complication possible by this point, Corrie was also diagnosed with thrush. Who knew that was even a thing? October 6: A pulmonary embolism went from Corrie's lung to her heart and caused her to go into acute cardiac arrest. (I wrote more about it here.) After fifteen minutes without a heartbeat, she was resuscitated and taken to ICU on a ventilator. Initially, the doctors believed she was having internal bleeding and prepared for emergency surgery, but further tests showed that her blood levels were good and there was no need for an immediate procedure. (Apparently it's really common to get an inaccurate read on blood levels when someone is coding and there is a great deal of fluid being rushed into their system.) Late night tests of "move this body part, give us a thumbs up, answer this question by nodding or shaking your head" showed no signs of brain damage. The anesthesiologist was the first to respond when Corrie coded and had her intubated very quickly, so she was "only" without oxygen for a few minutes... for which we're so grateful! October 7: The doctors began weaning Corrie off the ventilator and she responded well by breathing on her own. Her white blood cell count was high, indicating an infection somewhere, so she began receiving an antibiotic for that. A scan showed a possible other blood clot, but a further look showed that it was just "old blood" and no cause for alarm. Exactly 24 hours after she coded, Corrie was taken off the ventilator. October 8: Corrie had a procedure to insert a new PICC line (for nutrition) and to insert a drain into each of her lungs to drain off fluid. The doctors had also spotted a pocket of blood/infection in her abdomen that needed to be drained (and was apparently the source of the nausea all along), but the sedation didn't last long enough to insert an additional drain into her abdomen during the same procedure. Immediately following the procedure, the PICC line stopped working. October 9: Corrie had another procedure to drain the pocket of blood/infection inside her abdominal cavity and the PICC line began working. An echocardiogram showed that half of her heart was only functioning at 50%, but it was too soon after her acute cardiac arrest to know if the damage was permanent or temporary. A follow-up echocardiogram was scheduled for the following week. During the evening, Corrie's oxygen levels dropped and wouldn't come back up, so she was placed back on the ventilator. A scan revealed that one lung was filled with pneumonia and the other lung had partially collapsed. October 11: The doctors began reducing Corrie's sedation, so she woke up for the first time in ~40 hours. Although unable to speak while on the ventilator, my parents told her to use her fingers to spell out words... and her first finger spelling was "B-E-T-H"! So much win. (Sorry, Katherine... my name's just shorter.) However, a high heart rate during the night caused the doctors to keep her on the ventilator longer than originally planned. October 13: Some severe abdominal pain led to a CT scan, which showed that very little had drained from the pocket of blood/infection inside Corrie's abdominal cavity since the drains were inserted four days prior. She had another procedure in the afternoon to reposition the tube and put in a larger drain (which was successful, yay!) Corrie was finally taken off the ventilator in the evening and given an oxygen mask. October 14: We so desperately needed a good day at this point, and October 14 was definitely the turning point! Since being taken off the ventilator and having all the drains functioning properly, Corrie was able to spend a good portion of the day sitting up in a chair and even stood up during physical therapy... and I received my first text message from the princess since before she coded! October 15: Corrie continued to receive breathing treatments throughout the day from respiratory therapists as her lungs were still very weak. The doctors told us that she would remain in ICU until they were absolutely certain that she would not have to be placed back on the ventilator. They removed the drain from her right lung as well as her feeding tube, and she was also cleared to begin an all-liquid diet. October 16: The follow-up echocardiogram showed no permanent heart damage! October 19: Corrie was moved from ICU to ISCU (Intermediate Surgical Care Unit). October 20: The doctors removed the drain from her left lung, leaving "only" three abdominal drains still attached to her (in addition to the central line and IV pole, of course). October 22: Corrie was cleared from respiratory therapy as her lungs looked infinitely better than they did a week prior. She also received her last bag of IV nutrition (which also meant the end of frequent blood sugar testing and insulin shots... the IV nutrition has a lot of sugar!) and began prepping to move out of ISCU to a regular room. October 24 (2:00 a.m.): Corrie was moved to a regular room on the same hallway she was before she coded. The doctors removed one of her abdominal drains, leaving only two still inserted into her abdominal cavity. October 25: No longer on any IV medications (oral pills only) and rid of the IV pole, Corrie was able to go outside for little bit... the first time she felt the sunshine since the first week in August! October 26: A CT scan showed the pockets of blood were still in her abdominal cavity, but the infection was gone (white blood cell count was great) and the doctors believed the body would absorb the blood overtime, so they took out the remaining two abdominal drains. Our entire family got to spend the day together for the first time in exactly three weeks! And finally... October 28: After 60 consecutive days of her second hospitalization (23 at Forsyth and 37 at Chapel Hill), CORRIE GOT TO GO HOME! This, of course, is another blog post in and of itself, but oh, what a happy day it was! Whew! Congratulations if you managed to make it this far :) Honestly, getting all of this into one post was more for me than for my blog readers, but I'm happy to share the story with those who have followed along from the very beginning... and I'm very happy to finally have all of the photos and hospital updates consolidated into one place. Check back early next week for the "Welcome Home, Corrie" post - it's a little less crazy and a lot more exciting than this one! |
Subscribe to:
Posts (Atom)