{"id":4,"date":"2022-03-30T00:00:00","date_gmt":"2022-03-30T00:00:00","guid":{"rendered":"https:\/\/cota1.wpengine.com\/cotaforlandonsjourney\/our-story\/"},"modified":"2026-01-02T21:43:45","modified_gmt":"2026-01-02T21:43:45","slug":"our-story","status":"publish","type":"page","link":"https:\/\/cota.org\/cotaforlandonsjourney\/our-story\/","title":{"rendered":"Our Story"},"content":{"rendered":"

Landon<\/span> David Rost<\/span> is a very loving and happy little boy. His journey has been filled with many up<\/span>s<\/span> and downs. <\/span>He has already endured more during his short life<\/span>,<\/span> than most of us will in our entire lifetime. <\/span>Landon is a true miracle and blessing. <\/span>We have<\/span> only <\/span>seen<\/span> in person a few family <\/span>members<\/span> and friends, due to<\/span> the risk of<\/span> covid<\/span> exposures and other germs. We <\/span>need to stay healthy and ready<\/span>,<\/span> for when <\/span>he<\/span> get<\/span>s<\/span> the call for <\/span>his <\/span>transplant. <\/span><\/p>\n

Landon was born <\/span>premature in <\/span>April 2020 at 25 weeks, with his twin sister Lexi. Being <\/span>micro preemies,<\/span> they only weighed 1lb 8.3oz and 1lb 7.3oz<\/span>. They spent the first 18 days in the Saint Cloud NICU before his sister <\/span>unexpectedly<\/span> developed NEC<\/span> (necrotizing enterocolitis) <\/span>and suddenly passed away. Landon was transferred to Masonic Children’s Hospital<\/span> in Minneapolis<\/span>the very next day<\/span>. We knew the<\/span> doctors<\/span> were concerned about Landon a<\/span>s<\/span> they<\/span> told <\/span>days <\/span>prior,<\/span> he needed<\/span> to <\/span>be transferred to a different medical facility.<\/span> H<\/span>e had developed a blood infection from the belly lines and had a possible abscess that would need to <\/span>surgically <\/span>drained by his <\/span>spleen.<\/span><\/p>\n

Once the infection <\/span>was <\/span>under control, it was time to fix his Heart PDA with his first surgery. After<\/span> the surgery,<\/span> the surgeon told us his concern about <\/span>Landon possibly having developed NEC as well. <\/span>May 28<\/span>, 2020,<\/span> they told us they would be doing exploratory surgery to look for NEC and do Landon’s first liver biopsy. They found <\/span>NEC and had to remove two sections of his intestines<\/span>;<\/span> one<\/span> spot<\/span> that was about to burst and one spot that was dead. They removed a total of 11cm <\/span>of his 75 cm of intestines.<\/span> He ended up with fo<\/span>u<\/span>r <\/span>ostomies<\/span> and <\/span>we were<\/span> told he would have to grow bigger <\/span>before<\/span> they <\/span>c<\/span>ould reconnect his intestines putting them back inside his body.  <\/span><\/p>\n

After <\/span>Landon’s first liver biopsy, <\/span>his GI specialist told us about the <\/span>paucity of interlobular bile ducts and cholestasis<\/span> (fewer bile ducts inside of his liver).<\/span> A<\/span>t that <\/span>time,<\/span> she suspected <\/span>that <\/span>his high bilirubin was due to being born premature and being on the TPN nutrition fluids. That once he gets off TPN his liver should improve.<\/span><\/p>\n

On <\/span>July 22<\/span>,<\/span> 2020,<\/span> Landon had his s<\/span>econd liver biopsy<\/span>. There <\/span>were<\/span> concerns with his liver and the <\/span>biopsies<\/span> ha<\/span>d<\/span> shown change<\/span> since the<\/span> first<\/span> one<\/span>. <\/span>With the n<\/span>eed to figure out if his bile ducts are plugged<\/span> or what was <\/span>causing his bilirubin to keep increasing<\/span>, we<\/span> were<\/span> told<\/span> about a test called<\/span> a<\/span>HDIA scan<\/span>, w<\/span>here <\/span>a<\/span> radioactive tracer <\/span>was<\/span> inject<\/span>ed<\/span> it into the vein<\/span>,<\/span> an <\/span>imaging procedure to diagnose problems of the liver.<\/span><\/p>\n

July 30<\/span>, 2020,<\/span> Landon had the<\/span> HDIA scan to <\/span>determine the<\/span> flow<\/span> rate <\/span>in <\/span>the <\/span>bile ducts and gallbladder. There was a 1% chance the test would be conclusive and tell us what we need<\/span>ed<\/span> to know. No one on his team expected it to work and it was a <\/span>last-ditch<\/span> effort to avoid a more invasive surgery to see <\/span>what’s<\/span> going on. The contrast was able to go through an <\/span>IV<\/span> to his liver and gallbladder and <\/span>move <\/span>into his intestines. Th<\/span>at <\/span>mean<\/span>t<\/span> the liver damage <\/span>wa<\/span>s not Biliary Artesia <\/span>and most likely <\/span>was <\/span>from being on TPN and lipids for so long. They ha<\/span>d<\/span> seen some adverse reactions in other patients from being on TPN and lipids long term<\/span>,<\/span> but nothing like <\/span>Landon was experiencing leaving <\/span>his care team<\/span> quite puzzled. <\/span><\/p>\n

September<\/span> 9<\/span>,<\/span> 2020<\/span>  <\/span>Typically, when <\/span>the<\/span> refeed stool in ostomies<\/span>,<\/span> the bilirubin w<\/span>ould<\/span> go down, but Landon’s <\/span>kept<\/span> going up<\/span>, l<\/span>eaving his team very puzzled and requesting a second HIDA scan. They thought they ruled out Biliary Artesia from the last scan<\/span>,<\/span> but at this point they don’t know what else it could be.<\/span> Biliary atresia is a disease of the bile ducts that affects infants. Bile is the digestive liquid that the liver makes and goes through the bile ducts <\/span>in<\/span>to the small intestine, where it helps digest fats.<\/span> In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy the liver and cause scarring of the liver.<\/span> Landon’s doctors wanted<\/span> to retest before his big takedown surgery to reconnect his intestines, so they c<\/span>ould<\/span> prepare<\/span>—<\/span> if <\/span>need be,<\/span> to change the surgery to a Kasai.<\/span>Kasai surgery is where they take out the bile ducts from the bottom of the liver to the intestine<\/span>s<\/span>. The<\/span>y<\/span> attached the <\/span>small intestine <\/span>directly to<\/span> the liver<\/span>,<\/span> so the liver can drain properly.<\/span> We were told <\/span>if the Kasai was done <\/span>there was a <\/span>33%<\/span> chance it would help, <\/span>33% chance<\/span> it would work for a little while then need <\/span>a liver <\/span>transplant and <\/span>33%<\/span> chance it would fail and he would need a transplant <\/span>ASAP<\/span>. The surgeon just kept telling us<\/span> because Landon was <\/span>so small and it would be risky<\/span>. <\/span>The contrast did not even uptake, so the<\/span> second<\/span> HIDA test was inclusive.<\/span><\/p>\n

Sep 10<\/span>,<\/span> 2020 <\/span>Landon<\/span> had his take down surgery to reconnect his intestines<\/span>.<\/span> T<\/span>hey also did a c<\/span>holangiogram, which showed <\/span>movement<\/span> through his liver<\/span>. <\/span>A<\/span> third liver biopsy<\/span> was done<\/span>. It was a very long <\/span>13-hour<\/span> surgery<\/span>, <\/span>where three <\/span>drains<\/span> were put in: a<\/span> JP drain, <\/span>incision<\/span> drain, and <\/span>a <\/span>gallbladder<\/span> drain<\/span>. The gallbladder drain was <\/span>put in <\/span>placed<\/span> in hopes <\/span>to flush<\/span> it<\/span> and<\/span> push some of th<\/span>e<\/span> bile through<\/span>. T<\/span>hey also use<\/span>d<\/span> the drain to do more contrast <\/span>studies in the future<\/span>. <\/span><\/p>\n

Sep 16<\/span>, <\/span>2020 <\/span>W<\/span>e<\/span> got the biopsy results and it was unchanged from the last <\/span>biopsy<\/span>. I<\/span>t did show more fiber scarring<\/span>,<\/span> but the liver <\/span>was<\/span> still at a point where it c<\/span>ould<\/span> repair itself. <\/span><\/p>\n

By <\/span>mid <\/span>October<\/span> Landon<\/span> was completely off the TPN<\/span> but<\/span> his direct bilirubin was still <\/span>to<\/span> high. On O<\/span>ct 19<\/span>th<\/span> his direct bilirubin was<\/span> 15.7 <\/span>the normal range is 0-.5mg\/dl<\/span>.<\/span><\/p>\n

Oct 14<\/span>,<\/span> 2020<\/span> An <\/span>MRCP MRI <\/span>was done <\/span>to get better picture of <\/span>what<\/span> was <\/span>going on with his liver<\/span>. N<\/span>othing different or new was shown in the results. The<\/span> doctors thought <\/span>was <\/span>that<\/span> the bile ducts higher in his liver <\/span>we<\/span>re plugged<\/span>. So, <\/span>a drain <\/span>directly <\/span>in<\/span>to<\/span> the bile duct<\/span> called a biliary drain<\/span>would need to be put in<\/span>. <\/span>The doctors had never placed this drain in a baby this little before.<\/span><\/p>\n

Oct 16<\/span>, <\/span>2020 <\/span>The<\/span> biliary <\/span>drain <\/span>was <\/span>placed<\/span>.<\/span> Drs <\/span>we<\/span>re <\/span>still puzzled, questioning a possible choledochal cyst<\/span>. Landon’s<\/span> surgeon <\/span>wa<\/span>s<\/span> still not <\/span>fully convinced<\/span> it’s a cyst<\/span>,<\/span> as <\/span>cysts<\/span> usually<\/span> are <\/span>found much later in life<\/span>.<\/span> H<\/span>e<\/span> thought<\/span> there was a buildup of<\/span> sludge<\/span>. <\/span>With the <\/span>biliary drain<\/span>Landon’s <\/span>direct bilirubin finally started to go down<\/span>,<\/span> from the 15.7 to 6. <\/span>Either way the biliary drain bought us some time to try and figure out <\/span>what needed to be done <\/span>and g<\/span>ive<\/span> Landon<\/span> a chance <\/span>to grow.<\/span><\/p>\n

O<\/span>n October 28th t<\/span>hey p<\/span>laced<\/span> a<\/span> N<\/span>asojejunal<\/span> (<\/span>NJ<\/span>) <\/span>tube<\/span> <\/span>that is put in through the nose and goes through the stomach into the jejunum part of the small intestine.<\/span> The<\/span> NJ tube <\/span>would allow the<\/span>bile <\/span>to be refed<\/span> every four hours<\/span> by<\/span> collecting the bile and then<\/span> refeed <\/span>the bile via <\/span>a feeding pump. Refeeding the bile help<\/span>s to<\/span> keep<\/span> his sodium and electrolytes balanced. Bile is also important in the absorption of<\/span> nutrients<\/span> a<\/span>n<\/span>d vitamins.<\/span><\/p>\n

Nov 2<\/span> 2020<\/span> The <\/span>G<\/span>I doctor<\/span> did not like what she saw on<\/span> the<\/span> last liver ultrasound.<\/span> Blood is starting to flow the wrong<\/span> direction<\/span>, meaning<\/span> a possible Liver transplant <\/span>was <\/span>down the road<\/span> for Landon<\/span>.<\/span><\/p>\n

Nov 7<\/span>, <\/span>2020  <\/span>We<\/span> met with transplant <\/span>doctor, he reminded us that <\/span>Landon<\/span> wa<\/span>s still very small to undergo a transplant <\/span>surgery<\/span>.  He suggested <\/span>we <\/span>let Landon<\/span> grow more before <\/span>they’d<\/span> place<\/span> him on the transplant list. <\/span>The goal was<\/span> to get <\/span>Landon<\/span> as close to 22lb<\/span>s or more to give him a better chance of <\/span>having <\/span>a successful transplant. <\/span>It generally takes<\/span> about 3<\/span>-6<\/span> months to find a <\/span>match but<\/span>could be up<\/span> to a year or more. <\/span>The transplant surgery is<\/span> difficult<\/span> and takes up to<\/span> 8-10<\/span> hours<\/span>.<\/span><\/p>\n

Nov 16<\/span> 2020 Landon had another<\/span> MRI and<\/span> they <\/span>changed <\/span>the biliary <\/span>drain out<\/span>. They also<\/span> tried to place stent<\/span> to<\/span> open the bile duct<\/span> and replace<\/span>d<\/span> his external biliary drain<\/span>. U<\/span>nf<\/span>ortunately<\/span> placing the<\/span>stent was unsucc<\/span>ess<\/span>ful.<\/span><\/p>\n

Nov 29<\/span>,<\/span> 2020 After<\/span> 218 days<\/span> in the NICU Landon <\/span>finally <\/span>got to go<\/span> home<\/span>. He went home<\/span> with 3 drains and NJ tube<\/span>,<\/span> but home!<\/span><\/p>\n

Feb 13<\/span>,<\/span> 2021 Landon had <\/span>eye surgery<\/span> to help<\/span> correct his<\/span> retinopathy of prematurity (<\/span>ROP<\/span>). They also had to exchange his biliary drain. <\/span>(Replacement of<\/span> his biliary drain every three months<\/span> is<\/span>routine ma<\/span>intenance<\/span> to help lower risk of infection and to keep it from clogging.<\/span>)<\/span><\/p>\n

June 4<\/span>,<\/span> 2021 Landon <\/span>had<\/span> surgery <\/span>again <\/span>attempt<\/span>ing to<\/span> pla<\/span>ce<\/span> a <\/span>stent<\/span> in his bile duct<\/span>, in<\/span> hopes <\/span>of <\/span>los<\/span>ing<\/span> the biliary drain and NJ tube. Since the bile <\/span>cannot<\/span> go in <\/span>his<\/span> stomach, we are stuck with the NJ tube until he <\/span>no longer needs <\/span>the biliary <\/span>drain. The<\/span> stent placement was <\/span>unsuccessful<\/span>. <\/span>The<\/span>team<\/span> of doctors working<\/span> together with an <\/span>Interventional Radiology<\/span> (IR doctor) and <\/span>a Gastroenterologist<\/span> tr<\/span>ied<\/span> to scope <\/span>through<\/span> his mouth<\/span>,<\/span> but they just could not get passed the block<\/span>age<\/span> in his bile ducts.<\/span><\/p>\n

June <\/span>10<\/span> 2021 Landon had a<\/span>nother<\/span> sedated<\/span> MRCP<\/span> MRI <\/span>to try and give the doctors more insight <\/span>as to <\/span>what’s going on.<\/span><\/p>\n

June <\/span>22 <\/span>2021 <\/span>After r<\/span>outine<\/span> a<\/span>ppointments<\/span> and an ultrasound<\/span>,<\/span> the <\/span>doctors<\/span> were<\/span> concerned about a <\/span>portal <\/span>vein<\/span> clot<\/span>. They discussed if he should<\/span> have surgery to try and break up the blood clot<\/span>,<\/span> or <\/span>to<\/span>wait and watch for liver failure <\/span>and<\/span> move forward with transplant<\/span>. The team <\/span>was <\/span>unsure at th<\/span>e time<\/span> of<\/span> what to do<\/span>, especially<\/span> since doctors needed for surgery <\/span>were<\/span> not available<\/span>. <\/span>It was <\/span>decided<\/span>since <\/span>Landon<\/span> looked <\/span>healthy,<\/span> they would send us home, but warned they may call us back and want to admit him. <\/span>W<\/span>e drove the <\/span>two hours<\/span> home <\/span>then got<\/span> the call saying be back down by 11 am the next day to admit him and try blood thinner injections.<\/span><\/p>\n

June <\/span>24<\/span>,<\/span> 2021 <\/span>the<\/span> CT scan showed there was no blood clot<\/span>, <\/span>but the<\/span> portal vein<\/span> was very small<\/span>. <\/span>Landon was <\/span>to continue<\/span> with blood thinners to prevent <\/span>a blood clot from forming<\/span>.<\/span> Landon <\/span>has <\/span>blood thinner injections twice dail<\/span>y<\/span>.<\/span><\/p>\n

June <\/span>28<\/span>,<\/span> 2021<\/span> Unsure of<\/span> how to <\/span>proceed,<\/span> a<\/span> liver <\/span>transplant<\/span> would be the only alternative<\/span>. <\/span>Landon still needed to grow and <\/span>has <\/span>had his medical <\/span>team puzzled<\/span>. Landon’s<\/span> his labs <\/span>look good<\/span> as <\/span>the biliary drain is <\/span>definingly<\/span> helping<\/span>, even though<\/span> it is just a temp<\/span>orary <\/span>solution and <\/span>will need <\/span>surgery every 3 <\/span>months<\/span> to exchange the drain<\/span>, which has its own risks each time<\/span>.<\/span><\/p>\n

July <\/span>23<\/span>,<\/span> 2021 Landon had his <\/span>fourth<\/span> liver bio<\/span>psy.<\/span> Doctors discussed placing<\/span> a <\/span>fistula in Landon’s liver as<\/span> the vein and artery <\/span>had <\/span>started to branch together causing blood flow to be messed up.  <\/span>A pressure<\/span> test in the artery in <\/span>Landon’s<\/span> neck<\/span> showed<\/span> the portal vein being open <\/span>but <\/span>very <\/span>small<\/span>. <\/span>T<\/span>hey <\/span>decided<\/span> not to glue the trouble spot <\/span>fistula<\/span> in the liver<\/span> as it could<\/span> cause the main portal vein to clot off. <\/span><\/p>\n

September <\/span>17<\/span>,<\/span> 2021 We were t<\/span>old <\/span>the <\/span>best course with <\/span>Landon<\/span> w<\/span>ould<\/span> be<\/span> a<\/span> liver transplant. <\/span>More <\/span>appointment<\/span>s<\/span> and more tests<\/span> were done <\/span>before they c<\/span>ould<\/span> list him<\/span>. <\/span>We were told<\/span> to get all <\/span>Landon’s vaccinations done<\/span> first<\/span>,<\/span> since he would<\/span> be<\/span> unable to have them post-transplant. Once he receive<\/span>d<\/span> all of the <\/span>vaccines,<\/span> we would have to wait 30<\/span> days before he could be <\/span>officially<\/span> listed<\/span>for a transplant<\/span>. <\/span><\/p>\n

October <\/span>25<\/span>,<\/span> 2021 At 18 months old<\/span>, Landon<\/span> was<\/span> officially<\/span> listed<\/span> for a liver transplant<\/span>. <\/span>Unfortunately,<\/span> we were<\/span> told <\/span>Landon would<\/span> need to wait for a<\/span> deceased donor<\/span>;<\/span> a partial living donor liver <\/span>would<\/span> not work. It<\/span>’<\/span>s <\/span>quite<\/span> disheartening<\/span> to know<\/span>, due to Landon’s small size,<\/span> a liver for him means it must come <\/span>from a child<\/span>. <\/span><\/p>\n

January <\/span>6<\/span>, <\/span>2022<\/span> We got a call for a possible liver match. <\/span>It was a w<\/span>horl <\/span>wind and emotional 18 h<\/span>ours<\/span>.<\/span> All of Landon’s tests were good but<\/span> a<\/span>fter further review the donor liver was not as healthy and <\/span>could not be used. The medical <\/span>team <\/span>wanted to give <\/span>Landon<\/span> the <\/span>very <\/span>best chance of the transplant working. <\/span><\/p>\n

Fast forward a long roller-coaster of highs and lows in the NICU journey. With too many to count, pokes<\/span>,<\/span> ultrasounds, tests, contrast studies, blood transfusions and covid tests for every sedated procedure <\/span>or<\/span> surgery<\/span>, we<\/span> continu<\/span>e <\/span>on with his transplant journey with <\/span>more<\/span> count<\/span>s<\/span>, labs, ultrasounds, test, contrast studies,<\/span> and a few <\/span>hospital<\/span> stays for possible cholangitis from his biliary drain.<\/span> Medical staff is still uncertain<\/span>, as to why or what’s really going on<\/span> with <\/span>Landon’s<\/span>liver<\/span>.<\/span> Genetic testing did not reveal anything to explain the issues Landon is having<\/span>.<\/span> We do know there is a <\/span>biliary obstruction<\/span>,<\/span> but the exact cause is unknow. They think it could be <\/span>inflammatory stricture, choledochal cyst,<\/span> or<\/span> inspissated bile,<\/span> but probably<\/span> less likely biliary atresia<\/span>.<\/span> It is frustrating to not have answers, but w<\/span>e do know <\/span>that <\/span>the only fix<\/span> for Landon<\/span> is a transplant.<\/span> We keep praying and know that once Landon receives his life saving liver transplant, it will all be worth it to see our happy <\/span>loving <\/span>boy grow up. If he can keep a smile on his face through everything he has been through, we <\/span>will do everything humanly possible to<\/span> support him and be there for him every step of <\/span>this crazy journey<\/span>.<\/span><\/p>\n

Thank you for taking the time to read Landon’s journey so far. Please continue to keep Landon in your prayers, as a transplant <\/span>is<\/span> a <\/span>lifelong<\/span> concern<\/span>. <\/span>P<\/span>ost-transplant he will have<\/span> more <\/span>appointments, labs, medications<\/span>, and precautions<\/span> the rest of his life<\/span>.<\/span> We appreciate all the support you and the <\/span>growing <\/span>community of people around Landon ha<\/span>s<\/span> given our family.<\/span><\/p>\n

We <\/span>have <\/span>decided to partner with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses.  Please consider donating to COTA in honor of Landon<\/span>.<\/span> COTA funds are available <\/span>to him for his entire lifetime<\/span>. COTA funds <\/span>raised will <\/span>not only <\/span>support Landon for his transplant, <\/span>but also for <\/span>any transplant related medical expenses in his future.<\/span><\/p>\n

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s <\/span>only <\/span>fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. <\/span>100%<\/span> of each contribution made to COTA in honor of <\/span>each patient<\/span> helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/span><\/p>\n

Again, our thanks to each and every one of you for being there for us and especially for Landon.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Landon David Rost is a very loving and happy little boy. His journey has been filled with many ups and downs. He has already endured more during his short life, than most of us will in our entire lifetime. Landon is a true miracle and blessing. We have only seen in person a few family […]<\/p>\n","protected":false},"author":0,"featured_media":87,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-4","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/pages\/4","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/types\/page"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/comments?post=4"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/pages\/4\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/media\/87"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforlandonsjourney\/wp-json\/wp\/v2\/media?parent=4"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}