Help Deja & Kyle get Wesson to Ohio!
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SHORT VERSION: Wesson is the 21st medical case where a child has both volvulus and Hirschsprungs Disease, causing him to spend his first four months of life in the NICU [where the two older siblings weren’t allowed in to see him for two full months], followed by multiple hospital admissions. Deja was diagnosed with an unknown fetal mass at 5 months pregnant and had to wait until she delivered to see what it was. First surgery at ten hours old, ended up being malrotation and volvulus. His intestine had twisted while in the womb, part of it dying off. Surgeon brought a piece of intestine to the outside of his body to allow him to poop in a bag and created a mucous fistula where mucous would drain into another bag. Wesson had to pass poop into his diaper before he would be able to get the surgery to put him back together. For some reason, at 7 weeks old, he was given the surgery to reattach his intestines even though he had never pooped. Once put back together, he got really sick. He had been misdiagnosed. There were red flags that proved the second surgery to put him together never should have happened. Two weeks after that surgery, he was taken back for his third surgery to take apart the previous surgery, recreating the stoma and mucous fistula. He was diagnosed with Hirschsprungs Disease [ganglion cells tell our body when and how to pass poop but he’s missing those cells, rendering him unable to pass stool himself.] With such little healthy bowel left, he was also diagnosed with Short Gut Syndrome. Looking back he should have had one surgery but he left the NICU at four months old having had five surgeries. He went home with a central line [kind of like a permanent IV-its inserted through his chest and runs to a large vein near his heart to administer necessary nutrients he can’t get through food] , a g-tube [a tube placed directly into his stomach to feed him breast milk through a pump], an ostomy bag and a mucous fistula bag. Once home, he had some progression early on but has been mostly stagnant in his growth due to the fact he’s been throwing up his own poop for four months and his doctors ultimately still aren’t sure how to treat him. This has resulted in Wesson throwing up large amounts of his poop every 6-9 days, continued weight loss, less breast milk intake, lack of progression. It is imperative he continue to grow because the less his body is able to do on his own, the more help he needs, the more at risk he is for needing a liver and intestine transplant which is Deja and Kyle’s worst fear during all of this as it will greatly reduce Wesson’s quality of life and his chance at living a long, healthy life. Wesson can be seen by the best doctors for his case but they are located in Ohio. Kyle is a Marine stationed at Camp Pendleton in San Diego, posing a challenge for them to get the proper care Wesson so desperately needs. Funds raised will be to help the family travel to and from Ohio over the next few years while they seek answers and the best care in the nation for Wesson.
**Please read the disclaimer at the bottom regarding their other GoFundMe page**
LONG VERSION: I’ll try to sum this up as informative as possible while keeping it quick and to the point. When Deja was 5 months pregnant, she got news of an abnormal anatomy scan. A mass was detected and she began seeing the maternal fetal specialist weekly. After multiple ultrasounds and a fetal MRI, the doctors were unable to tell what the mass was. That was the beginning of the “wait and see what happens” mindset she faced throughout her entire pregnancy and is still facing now, over a year later. Deja was induced on February 16th. Deja, Kyle, their other two children, Remington-5 and Colton-3, were able to spend two hours with Wesson before he was taken to the NICU. [This would be the last time their family would be all together for two months as it was flu season so Remi and Colt weren't allowed in the NICU until the season passed. Two whole months. Imagine the reality of what that meant for their family.] They still couldn’t figure it out so they had to operate on him at ten hours old to see what was going on. His intestine had twisted, causing a part of it to die off which had to be removed. The surgeon created a stoma for Wesson to pass poop through into a bag along with a mucous fistula where fluid would drain from his bowel into a separate bag. Wesson would stay in the NICU for 6-8 weeks while his intestines healed well enough to be reattached then they’d be sent home and this would all be behind them. Or so they thought. Wesson had one goal he had to meet before the reconnection surgery-pass poop into his diaper. To do that, they would withdraw poop from his ostomy bag and insert a tube into his fistula where the poop would be slowly pumped into his bowel. The goal-get intestines to respond and pass poop normally. Not only did he never poop, those refeeds kept spilling out. Looking back, Kyle and Deja see what a mistake it was to move forward with the reconnection surgery although at the time they had no idea there could be something else going on nor did any doctors voice concern. The reconnection surgery should have never happened but somehow a team of doctors all came to the conclusion that it should, regardless of the lack of necessary progress. Within a few days of his surgery, Wesson became extremely distended and was throwing up large amounts of different colored green bile. After a rectal biopsy, where he bled so badly he needed a blood transfusion, it was determined Wesson has Hirschsprungs Disease and because he has such little healthy bowel left, he also has Short Gut Syndrome. The surgeon was very concerned what this meant for Wesson’s ability to grow and his quality of life. They were told to be prepared for the possibility of liver and intestinal transplants, allowing them a few years at a time before Wesson would go into organ failure, requiring another transplant every so many years. Exactly two weeks after his second surgery, he was wheeled back for his third surgery-to take apart what they had just reconnected. That was the worst for Kyle and Deja as they dug deep into research and knew how important that surgery was. Our family gathered at Fisher House while Wesson went back for five hours. The surgeon anticipated only 15 cm of healthy intestine which would present many challenges. Halfway through the surgery, the nurse called and handed the phone to the surgeon who, with a wave of relief in his voice, told Kyle and Deja they found 93 cm of healthy intestine! An absolute miracle and answered prayer. This meant Wesson had a fighting chance at a normal-ish life. Wesson was intubated [breathing tube down his throat] for days after this surgery and when they went to take the tube out, he had a rare reaction [Dr. said it happens maybe twice a year] where his vocal cords were swollen and he was unable to breathe on his own. While a nurse calmly and steadily pumped an oxygen bag to keep him alive, all sorts of teams went running into the NICU to get him intubated again. There were a lot of scary moments during Wesson’s journey but that one made Kyle and Deja realize how high the stakes really are. What this all ended up meaning was Wesson would be unable to maintain nutrition on his own. He would need a g-tube placed in his stomach where breast milk would go directly into his stomach. Deja never had the chance to breastfeed him at all as every bit that went in had to be measured. She was so excited for him to be put back together so she could nurse him like she has her other two babies but unfortunately she would never get the chance. He would also need a Broviac, which is a central line, placed in his chest to deliver all the nutrients he can’t get through food. Those nutrients are called TPN-Total Parenteral Nutrition. The downside with that is the lipid [fats] damage his liver over time. How long Wesson is dependent on TPN more than breast milk and eventually food, will determine his quality of life and his ability to avoid transplants. The goal is to get him up on his milk feeds and down on his TPN AS SOON AS POSSIBLE. After four months in the NICU, Wesson was able to go home with his family and begin living a normal life filled with a ton of appointments and lots of adventures.
Fast forward to now, one week before Wesson’s first birthday. Wesson was making great progress his first few months out of the NICU. Going up in breast milk, gaining weight, TPN going down. Everything was going well until August. He got to 23ml of milk per hour through his g-tube but his output [poop] wasn’t slowing down so his feeds sat at 23 ml/hr for a few months. In November, Wesson began throwing up his poop. Yes, his own poop coming out of his mouth. This is a huge red flag for kids like Wesson. He has also been admitted to the hospital five times over the last eight months, three of the stays being during December [one stay over Christmas but thankfully Santa visits the hospital too so they could still celebrate as a family, even if stuck in a hospital room] and January, one stay specifically for the fact he was throwing up his poop. During all of these stays, Deja was pressing doctors and the surgery team for answers, ideas, a plan of treatment. For four months now, Wesson has been consistently throwing up his own poop every 6-9 days and the doctors still have no idea what is going on. In the meantime, Wesson went from 23ml/hr of milk down to 5ml/hr. Breast milk is vital to get him to the point of progress but he cannot grow or get better at such a low rate of milk. It’s constant steps backwards and no answers or urgency to get Wesson the help he needs. His doctors have suggested multiple possible causes but all have been ruled out. Deja fought insurance for five months to get Wessons cares transferred to Rady’s to see a doctor there that actually specializes in Hirschsprungs but after the referral finally went through, the doctors first available appointment was still three months away. An eight month process just for a second opinion. At this point, they don’t have that kind of time to waste anymore. The longer Wesson is unable to digest his food properly, the higher risk of needing a transplant.
USE OF DONATIONS: While Wesson was in the NICU, Deja reached out to a world-renowned doctor who specializes in colorectal and pelvic reconstruction surgery. Within a few hours he was calling Deja to offer advice and support. This doctor helped to create one of the very first centers where all necessary teams are present to treat kids like Wesson. People travel from all over the world to be seen here. This is the absolute best place Wesson can be and the best care he can get. Out of desperation after another poop throw up, Deja reached out to this doctor again at 1:30 am via email and within 4 hours, this doctor, who doesn’t even have Wesson as a patient, responded asking if they can get Wesson to see him as “he needs a devoted colorectal center with expertise in hirschsprung surgery. This involves surgeons, not only GI docs.” They already wanted Wesson to be seen there but the fact this doctor-clearly a busy man-cares enough about patients that aren’t even his to almost immediately hop on a phone call and then email her back so fast shows his character and desire to truly help their family. The only catch-they are located at Nationwide Childrens in Columbus, Ohio, while Deja and her family live in San Diego. They will do anything to get him seen there as often as needed to get Wesson in the right hands and they already regret not getting him there earlier. Deja will likely make the trips alone often but their family has spent so much time apart over this last year. Four months in the NICU, back to back to back hospital stays, Kyle sent away to help protect the border. While the whole family won’t go together every single time, the kids would benefit greatly to be together as much as possible especially during long stays, such as surgeries. Remington and Colton have sacrificed so much and are so resilient but they start to miss their momma and baby brother and shouldn’t have to continue to be separated during these trying times. Any money raised will go toward facilitating travel to and from Ohio, a rental car, possibly a hotel if the Ronald McDonald house is filled up, food, any traveling expenses.
FOLLOW ALONG: Deja will be starting a Facebook page dedicated to sharing Wesson’s journey as well as other family related stuff. Search for Go With Grace and hit like to be updated with the most recent information.
DISCLAIMER: Another GoFundMe page does exist for the family that was created during the time Wesson was in the NICU. The funds raised at that time were used for food, gas, medical expenses and supplies insurance did not and still does not cover. That one has been shut down and any funds raised from this point forward will be specifically for traveling to and from Ohio and keeping the family together as often as possible. We appreciate your continued love and support.
**Please read the disclaimer at the bottom regarding their other GoFundMe page**
LONG VERSION: I’ll try to sum this up as informative as possible while keeping it quick and to the point. When Deja was 5 months pregnant, she got news of an abnormal anatomy scan. A mass was detected and she began seeing the maternal fetal specialist weekly. After multiple ultrasounds and a fetal MRI, the doctors were unable to tell what the mass was. That was the beginning of the “wait and see what happens” mindset she faced throughout her entire pregnancy and is still facing now, over a year later. Deja was induced on February 16th. Deja, Kyle, their other two children, Remington-5 and Colton-3, were able to spend two hours with Wesson before he was taken to the NICU. [This would be the last time their family would be all together for two months as it was flu season so Remi and Colt weren't allowed in the NICU until the season passed. Two whole months. Imagine the reality of what that meant for their family.] They still couldn’t figure it out so they had to operate on him at ten hours old to see what was going on. His intestine had twisted, causing a part of it to die off which had to be removed. The surgeon created a stoma for Wesson to pass poop through into a bag along with a mucous fistula where fluid would drain from his bowel into a separate bag. Wesson would stay in the NICU for 6-8 weeks while his intestines healed well enough to be reattached then they’d be sent home and this would all be behind them. Or so they thought. Wesson had one goal he had to meet before the reconnection surgery-pass poop into his diaper. To do that, they would withdraw poop from his ostomy bag and insert a tube into his fistula where the poop would be slowly pumped into his bowel. The goal-get intestines to respond and pass poop normally. Not only did he never poop, those refeeds kept spilling out. Looking back, Kyle and Deja see what a mistake it was to move forward with the reconnection surgery although at the time they had no idea there could be something else going on nor did any doctors voice concern. The reconnection surgery should have never happened but somehow a team of doctors all came to the conclusion that it should, regardless of the lack of necessary progress. Within a few days of his surgery, Wesson became extremely distended and was throwing up large amounts of different colored green bile. After a rectal biopsy, where he bled so badly he needed a blood transfusion, it was determined Wesson has Hirschsprungs Disease and because he has such little healthy bowel left, he also has Short Gut Syndrome. The surgeon was very concerned what this meant for Wesson’s ability to grow and his quality of life. They were told to be prepared for the possibility of liver and intestinal transplants, allowing them a few years at a time before Wesson would go into organ failure, requiring another transplant every so many years. Exactly two weeks after his second surgery, he was wheeled back for his third surgery-to take apart what they had just reconnected. That was the worst for Kyle and Deja as they dug deep into research and knew how important that surgery was. Our family gathered at Fisher House while Wesson went back for five hours. The surgeon anticipated only 15 cm of healthy intestine which would present many challenges. Halfway through the surgery, the nurse called and handed the phone to the surgeon who, with a wave of relief in his voice, told Kyle and Deja they found 93 cm of healthy intestine! An absolute miracle and answered prayer. This meant Wesson had a fighting chance at a normal-ish life. Wesson was intubated [breathing tube down his throat] for days after this surgery and when they went to take the tube out, he had a rare reaction [Dr. said it happens maybe twice a year] where his vocal cords were swollen and he was unable to breathe on his own. While a nurse calmly and steadily pumped an oxygen bag to keep him alive, all sorts of teams went running into the NICU to get him intubated again. There were a lot of scary moments during Wesson’s journey but that one made Kyle and Deja realize how high the stakes really are. What this all ended up meaning was Wesson would be unable to maintain nutrition on his own. He would need a g-tube placed in his stomach where breast milk would go directly into his stomach. Deja never had the chance to breastfeed him at all as every bit that went in had to be measured. She was so excited for him to be put back together so she could nurse him like she has her other two babies but unfortunately she would never get the chance. He would also need a Broviac, which is a central line, placed in his chest to deliver all the nutrients he can’t get through food. Those nutrients are called TPN-Total Parenteral Nutrition. The downside with that is the lipid [fats] damage his liver over time. How long Wesson is dependent on TPN more than breast milk and eventually food, will determine his quality of life and his ability to avoid transplants. The goal is to get him up on his milk feeds and down on his TPN AS SOON AS POSSIBLE. After four months in the NICU, Wesson was able to go home with his family and begin living a normal life filled with a ton of appointments and lots of adventures.
Fast forward to now, one week before Wesson’s first birthday. Wesson was making great progress his first few months out of the NICU. Going up in breast milk, gaining weight, TPN going down. Everything was going well until August. He got to 23ml of milk per hour through his g-tube but his output [poop] wasn’t slowing down so his feeds sat at 23 ml/hr for a few months. In November, Wesson began throwing up his poop. Yes, his own poop coming out of his mouth. This is a huge red flag for kids like Wesson. He has also been admitted to the hospital five times over the last eight months, three of the stays being during December [one stay over Christmas but thankfully Santa visits the hospital too so they could still celebrate as a family, even if stuck in a hospital room] and January, one stay specifically for the fact he was throwing up his poop. During all of these stays, Deja was pressing doctors and the surgery team for answers, ideas, a plan of treatment. For four months now, Wesson has been consistently throwing up his own poop every 6-9 days and the doctors still have no idea what is going on. In the meantime, Wesson went from 23ml/hr of milk down to 5ml/hr. Breast milk is vital to get him to the point of progress but he cannot grow or get better at such a low rate of milk. It’s constant steps backwards and no answers or urgency to get Wesson the help he needs. His doctors have suggested multiple possible causes but all have been ruled out. Deja fought insurance for five months to get Wessons cares transferred to Rady’s to see a doctor there that actually specializes in Hirschsprungs but after the referral finally went through, the doctors first available appointment was still three months away. An eight month process just for a second opinion. At this point, they don’t have that kind of time to waste anymore. The longer Wesson is unable to digest his food properly, the higher risk of needing a transplant.
USE OF DONATIONS: While Wesson was in the NICU, Deja reached out to a world-renowned doctor who specializes in colorectal and pelvic reconstruction surgery. Within a few hours he was calling Deja to offer advice and support. This doctor helped to create one of the very first centers where all necessary teams are present to treat kids like Wesson. People travel from all over the world to be seen here. This is the absolute best place Wesson can be and the best care he can get. Out of desperation after another poop throw up, Deja reached out to this doctor again at 1:30 am via email and within 4 hours, this doctor, who doesn’t even have Wesson as a patient, responded asking if they can get Wesson to see him as “he needs a devoted colorectal center with expertise in hirschsprung surgery. This involves surgeons, not only GI docs.” They already wanted Wesson to be seen there but the fact this doctor-clearly a busy man-cares enough about patients that aren’t even his to almost immediately hop on a phone call and then email her back so fast shows his character and desire to truly help their family. The only catch-they are located at Nationwide Childrens in Columbus, Ohio, while Deja and her family live in San Diego. They will do anything to get him seen there as often as needed to get Wesson in the right hands and they already regret not getting him there earlier. Deja will likely make the trips alone often but their family has spent so much time apart over this last year. Four months in the NICU, back to back to back hospital stays, Kyle sent away to help protect the border. While the whole family won’t go together every single time, the kids would benefit greatly to be together as much as possible especially during long stays, such as surgeries. Remington and Colton have sacrificed so much and are so resilient but they start to miss their momma and baby brother and shouldn’t have to continue to be separated during these trying times. Any money raised will go toward facilitating travel to and from Ohio, a rental car, possibly a hotel if the Ronald McDonald house is filled up, food, any traveling expenses.
FOLLOW ALONG: Deja will be starting a Facebook page dedicated to sharing Wesson’s journey as well as other family related stuff. Search for Go With Grace and hit like to be updated with the most recent information.
DISCLAIMER: Another GoFundMe page does exist for the family that was created during the time Wesson was in the NICU. The funds raised at that time were used for food, gas, medical expenses and supplies insurance did not and still does not cover. That one has been shut down and any funds raised from this point forward will be specifically for traveling to and from Ohio and keeping the family together as often as possible. We appreciate your continued love and support.
Organizer
Pam Grace
Organizer
San Diego, CA