Support Jake's Journey to Recovery

Hello! We are the cousins and siblings to Michelle (Lynda & Jeremy; Jamie; Jon & Danny).

On behalf of the Alongi family, we created this GoFundMe to support Jake's recovery. For those of you who may not know, Jake was born as a micro premie at 24 weeks and has taught every day to have the best life possible! In leiu of a meal train, we thought this would be more helpful as someone is with Jake the Warrior 24/7 while he's still in the hospital!

Due to the severity of Jake's physical needs, this has put a major financial strain on the family. Any support would be so appreciated! :)

See his Mama's update below from today to better learn how your contributions will be a blessing to the Alongi Family!! THANK YOU!!

"Jake is currently 3.5 years old and just underwent his 6th major GI surgery. This surgery like the previous surgery 2 years ago, was not one that was “planned.”

Jake had been struggling with bowel distention, intermittent difficulty with his gtube feeds, and struggling to have bowel movements on his own. Prior to surgery Jake required rectal irrigation and decompression which was signaling to myself and his team that something wasn’t right. 3 weeks ago Jake was admitted to the childrens hospital at Westchester Medical since his surgeon was very concerned about how he looked clinically and what he was seeing via X-ray. At that time, Jake underwent an Upper GI study which revealed colonic dysmotility and IMMENSE bowel distention which can be seen in one of the photos. He also tested positive for Flu A and Adenovirus. Jake spent a few days in the hospital and we agreed to take him home managing him for a few days until everything was thought through and evaluated a tad further. Jakes surgeon text me on Friday, January 31st that Jake was on the surgery schedule for Monday.

Jakes surgery was a success. Unfortunately, he NO longer has the main 3 portions of his colon (lost parts over several surgeries in the past and the remainder during this current surgery).

What did Jake actually have done?!

He had a temporary central line placed in his neck, he had a full laparotomy (all his intestines taken out and gone through part by part), he had an extensive amount of adhesions removed from his small intestine, a blood transfusion and his small intestine connected into the base of his colon at the sigmoid section (right above the rectum). He is very lucky he currently DOES NOT require a colostomy bag at this time.

Jake was on extubated from surgery and a few days later began to struggle and went into Respitory distress. Since Jake carried some baggage with illness into the surgery, he struggled with fluid retention, and unfortunately developed an extensive pulmonary edema . Jake required the highest level of oxygen and respiratory supports and he almost wound up intubated. We were thankful at that time he responded to being on a BiPAP though he was struggling immensely to breathe since he lungs were in bad shape.

It has been 2 WEEKS since his bowel surgery and he is still in the PICU (pediatric intensive care). Due to all of the post operative lung issues, Jake developed a post operative ileus (the stomach/GI system shut off) and he required stomach decompression which we were able to do through his gastronomy tube. In the mist of all of this, Jake required a 2nd blood transfusion and he developed a fluid filled sac at the incision which is called a “seroma.” We are thankful it is not an umbilical hernia but it is painful and not pretty to say the least. Jake had to have the temporary central line removed from his neck at day 11 since it was a source of infection. He had a blood culture done and thankfully everything came back clean. He still required IV access so two lines were placed after many attempts since his veins are very fragile (one line was done by anesthesia and the other by an amazing mama and PICU nurse). One of the pictures you will see bruise and needle sticks all over his arm in an attempt to get a PICC line with no success. This poor child has been poked, pried, violated, healed, given the opportunity to live, and so much more in his short time on earth. This child is meant to do something great and is here to teach us all very valuable lesson in life.

We are so thankful for all of the hundreds and hundreds of people who are praying for our sweet boy. It’s incredible to see the power of prayer and moving mountains for this sweet angel.

Today, Jake took a turn in the right direction and things seem to be progressing correctly for him for the first time in a few weeks. He currently requires limited to almost no respiratory support and he had two very large bowel movements last night. They were able to place his gtube back into his stomach stoma and if he is able to maintain his current status and not vomit, he will be able to begin coming off his TPN/PPN as feeds are introduced to his new G.I. system. This could be a struggle since his brain and gut have to figure out how function now that he has 99% of his colon removed.

Jake is not yet out of the woods, but things are finally heading in the right direction. We ask that everyone continue to pray for this WARRIOR! Unfortunately, Jake has now been set back physically in many ways, and he will require an immense amount of physical therapy in order to get back to where he was prior to surgery in terms of his physical development. Laying in bed and recovering from surgery without complications is difficult enough for a typical child let alone complications for a child whom has a diagnosis of PVL and spastic diplegia cerebral palsy.

Jake is my/our hero!!! He is the strongest little boy anyone has ever seen, and he continues to amaze everyone around him with his cognitive abilities and his tenacity towards life. So many people have asked how they can help. If you feel in your heart to donate, ❤️ we would be most grateful!

Thank you to everyone who has been praying, reaching out, checking in, and generously helping our family through another very tumultuous time. The saying is very true as much as we all hate to say it that it takes a village and without ours, I don’t know where we would be. Well love all of you and are so thankful for everyone who is supporting us from near and far.

Xoxo,

The Alongi Crew"