Keeping Ethan comfortable while fighting Intestinal failure!

Hey guys!

We have struggled and lived on a boot string but we have hit the wall. We knew eventually it was going to happen but we are proud we made it this far!

For those who know us you know our journey for those who don't we are a grandma, mom, and 16 year old whom in August of last year was basically thrown into having to move ASAP to the Knoxville TN area for medical when the doctor in NY quit on us.

Ethan is 16 years old has struggled with medical conditions since birth. He has autism, global developmental delay, sensory processing disorder, cyclic vomiting syndrome, gastroparesis, insomnia to name a few. In December of 2022 everything we knew and how we lived changed. Ethan was taken to the hospital and had to have an emergency surgery because his colon had swelled to 20 cm.

The surgery didn't solve the issue and less than 24 hours later he was swelled back to 12.5 cm. We were transferred to Burlington, Vermont where the only thing that was figured out was his internal organs were paralized and he ended up with a picc line. After 30 days he was transferred to NYC where nothing was solved but he did get Covid and found out he had ecoli. After a total of 63 days between all the hospitals we came home.

In April of 2023 he became ill and due to two doctors over looking things he ended up with sepsis and septic shock. He had a fever of 107.7 and coded at least twice. He had to be life flighted and water resuscitate all the way to Burlington, Vermont. He had 2 confirmed but a possibility of 4 blood bacterial infections. We also found he had 2 blood clots at his picc line site. We were forced to travel by ambulance to NYC for a scheduled motility test even though he was still in sepsis. Then back to Vermont to be readmitted. We had to threaten the hospital with the news, social services, and calling his insurance to be discharged as the admitted they were holding us hostage until the results of the test came back.

In early May the doctor from the motility test in NYC called and told us his colon was dead. Then a week later called back and said she was wrong it was not functioning as it should so her suggestion was an ileostomy. The new GI set us up with an appointment with the surgeon before he even met us. We were told by everyone that this was the cure once this was done everything would be wonderful. July 2023, he had a loop ileostomy done. A 3 to 5 day hospital stay turned into 18. He started having pseudo-obstructions from the second day of surgery.

We started leg work to go to Boston or Cincinnati for a second opinion. January 2024 we went to Cincinnati. We had a plan set and Ethan had his 3rd picc line infection which trumped the plan. Cincinnati doctor didn't do TPN so we found a place in Knoxville we flew down in April 2024 to meet the doctor. He said all the right things and told us he could help us. We went home knowing we needed to be in Knoxville.

We sold stuff, there was a benefit held by a friend, we got donations. We were working hard to get there but we knew we had to have a safety net to go with. Then we found the NYC test results that no one had or would share with us and we sent them to his GI. All of a sudden documents were being changed and long story short he quit on us. Our PCP had talked to him and she was very concerned of what would happen if we ended up hospitalized. So our hand was forced. We were going to move to Tennessee and stay in a hotel. But the place we are living in came through first. We moved in a hurry. No safety nets, no fall back ons, here we are. Keala found a job within 2 weeks of arriving.

The doctor that promised us sunshine and rainbows turned out to be a bust. He told us Ethans insides were just ugh. Direct quote from his mouth after the second gj tube was placed. We had to change doctors. So here we are fighting to get answers for his medical conditions and to keep him here. Where his new GI is actually fighting with us to find answers to help Ethan.

Ethan has never been with anyone but Keala and I (except when he was very young) but in the next 2 weeks I am going to have to find an income. Which means we would have trust strangers to come in our home and take care of Ethan. We dont trust strangers with Ethan (mostly because Ethan has a hard time telling people when things are wrong) so we are trying to figure something out in these next 2 weeks. We have applied for a program and I should be able to start as an employee by August-September we are on the wait list now.

With Ethan being selectively verbal and rarely talks to anyone but Keala and I leaving him with a stranger is going to be detrimental and traumatizing for him and his health. Also, I'm already taking care of him so we dont have to train anyone. We are trying to raise enough money to pay me a weekly salary to be able to stay home until the program kicks in.

Some facts:

Ethan has lived with intestinal failure since 2022 which is a rare condition. It's considered an orphan disease and affects roughly 40,000 in the US. In 2024 there were roughly 350.1 million people in the United States. The percentage of 40,000 out of the US population is approximately 0.01208%

Think about that number its crazy. We were told on a uneducated guess of what happened to Ethan COULD (It doesn't mean it has but it could) only happen to 1 in a million. Then to top it with Chronic Intestinal pseudo-obstruction. Also known a paralytic ileus, another rare condition