Noah’s Specialty Needs Fund

Hello!

My name is Jessica and I am the mother of a beautiful 3 1/2 year old medically complex, specific needs son named Noah Jack❤️

Our story is not for the faint of heart, and it is very hard for me to do this on this platform, but it’s a story that should be told, and we are very much in need of the help moving forward.

My son was born five weeks early in the middle of the worst part of the Covid shut down. There were no reasons for why.

He was born with Esophageal Dysphasia, a.k.a. severely under developed swallow, with no ability to suck, root gag, or move his mouth.

He was also born with severe reflux and low tone issues throughout his GI tract and body that went un diagnosed due to lacking in proper medical care. He has been on a suction machine, much like you would see at the dentist, to keep his throat clear and is currently still on one as we continue to work on the swallow. Meaning that 24 hours a day, my son has the capability of choking because he cannot manage his own secretions fully on his own. The suction machine goes everywhere with us to keep his airway clear in case of a reflux episode. This is very rare and ambulances. Do not even have this equipment, as of yet. 

He was intubated and had a gastronomy tube inserted at less than a month old. He spent the first four months of his life between two hospitals, stuck in an isolate choking 24 hours a day, with people in masks and no toys, stuffed animals or anything of comfort whatsoever, due to restrictions from Covid. This combination of things led to a ton of different health issues, and eventually a feeding tube was placed into his nose to bypass his stomach that caused him severe trauma.

 

As of now, my son is on 18 hour a day G-tube feedings through his stomach and a specialty neurological food that is ridiculously expensive but the only way that he gains weight and is not covered by insurance. 

Although we were told that he had every chance for him to develop a swallow, unfortunately, one medical professional decided to make a different decision and put my son on a medication that children are not supposed to be put on in general, at an extremely high dosage, and that has killed Neonates. This also caused seizure type activity and sensitivity’s to lights. One of the worst side effects of this is also Dysmotility of his stomach, which is why the need to bypass his stomach was necessary.

 

But it should not have been necessary. It created the perfect conditions for my son to choke. This is the perfect storm. We still live with these decisions on a daily basis, because the only thing that allows it to get better is time and a lot of work, and my son could possibly never fully be able to eat out of his stomach and have to require a feeding tube permanently. We just simply don’t have those answers yet.

My son went septic because of this medication as well, and our entire lives changed. Because of the transfer of hospitals after that incident, no information was exchanged, and they actually proceeded to put him on it again at the second hospital, even though I battled with everything I had, and even tried to go to court, and It almost took his life and caused him to go septic again. 

We lived the first year and a half of his life between two hospitals, and what he has gone through is nothing short of an absolute living nightmare.

When some of these professionals ran out of answers, they decided to test my sons ability to swallow without permission as they wanted us out of the hospital at that point.

 

Three times in a week, I tried to leave to simply go home, and just take a shower as I pretty much lived at the hospital with him because they refused to offer him the one on one care he required. 

And three times that week, people took my sons life into their own hands and took him off monitors and left to choke in a crib by himself, and he had three cardiac arrests that week. Not one of them due to his own body.

Each one he coded between 5 to 10 minutes in between those three cardiac arrest, the under developed swallow, and the medication that almost took his life twice, my son is a literal miracle from God. There was absolutely no excuse for this. None. But the damage was done. 

I am a full-time caregiver which requires 24 hour eyes on him a day, because, although he is surpassing every odd, you simply cannot time out when a child with dysmotility, reflux, and an underdeveloped swallow is going to choke. The combination of unanswered questions for my little guy on top of the severe medical trauma, makes life extremely hard, and a constant battle for us every day. Our days consist of physical therapy and 6 to 8 hours a day of practicing eating tiny bites of puréed food to continue to develop the swallow and build strength in his stomach, as well as trying to balance, physical tone issues with a dysregulated nervous system, due to severe trauma from being neglected in a hospital and making sure his sympathetic nervous system does not shut down due to three Cerebral palsy diagnosi.  His neurologist stated, was one of the rarest cases he had seen, as you just do not see a child with all three types of Cerebral palsy. They actually don’t even know if that is the correct diagnosis but because there are so many variables and unanswered questions, we have been unable to do updated MRIs to assess any further damage although it ultimately would not change the outcome. The hardest part for me every day is not the work, it is simply accepting the fact that this was not what my son was born with, and these things never should have happened. I have no idea when or if I will ever be able to work again and if it is a possibility, it is not anywhere in the near future. 

I am not one to reach out for help, and I have managed to make things work on an SSDI income, and a little bit of government assistance for the last two years. There are not many resources available for special needs children with medical complexities.

My son’s needs are getting more expensive, he needs specialty equipment that isn’t covered by insurance, as well as previous medical bills that are currently affecting my credit, which makes it harder, moving forward to acquire things that he may need. He requires the most expensive teething medicine because we are unable to pull teeth safely due to the swallow, and developed tension patterns from the inability to cry, in his TMJ muscle so he has moments of total lock jaw which is a struggle. He still does not cry as he also had unnecessary Botox put into his salivary glands at three months old, again when I left the hospital behind my back, and it stalled his progress of swallowing for three months because it froze his face. Again, this never should have been done, was agreed upon and done on a rare occasion I had to go home to shower. 

This is the hardest thing I’ve ever done. But there is nothing I will not do for this little boy. I have fought for him to be alive for 3 1/2 years, and I still fight for that every single day because there were too many variables in the middle of a terrible pandemic, and he did not receive the medical treatment that he deserved, so I have spent every second of my time trying to make up for that and reverse the damage. Some of that damage will never be reversible. He shows signs of extreme child PTSD and autism and that is a route we are just now able to approach. I am unable to ask for back up caregivers, or help most of the time, because my son is severely terrified of people.

I am also unable to drive him anywhere due to his need of being suctioned in the backseat, so I have to pay out of pocket for Lyft or Uber when if it is safe enough to put him in a car, which is still very hard to gauge. There are no answers as of yet if and when he will fully be off of his suction machine or Gtube feedings so it’s literally just day by day. 

We love Jesus and this little boy is my entire world.

I have spent 3 1/2 years advocating and dedicating every second and every breath I have to providing the best quality of life for my son that I can. And at this point in order to do that, I am humbling myself as a mother, and reaching out for a little bit of help. I have had to learn to accept that I will never have answers for some things, but if there’s anything I can do to make this little boy’s life easier, I will do it.

Maybe this will do nothing but allow for our story to start being told. Maybe it will give someone else the courage to advocate for their child as hard as they possibly can or potentially just let somebody know they’re not alone.

Any type of help would be appreciated. My son has never gone without anything, but in order for him to live his best life moving forward, he is in need of things that unfortunately, insurance, companies, and doctors don’t feel the need to cover at times.

If anything, I just thank you for listening to my story and taking the time to read. There is not anything I cannot document or back up, and I would gladly post what was done with some of the donations, if anyone was kind enough to help. 

This fund will be directly used for therapy equipment such as a small Walker and wheelchair, specialty bed and car seat, specialty formulas and foods and items not covered under insurance along with some of the more expensive weekly needs and upcoming unknown costs.  My income just covers my house and utilities and there’s no option for me to work currently. He is still a choking risk, and his needs are too extensive to train anyone else to help at this time due to the amount of details. 

I don’t know what the future holds for my little guy. But I can say, without a doubt he is the strongest human I have ever met, and this mama will keep fighting and keep advocating to give him the absolute best life possible! He deserves it❤️

NEVER STOP ADVOCATING FOR YOUR CHILDREN! If I would have stopped fighting, my son would not be here. So if I can ask anyone to take anything from this, it is protect your babies in a medical setting, no matter how someone may make you feel or how much training they may tell you that they have. Do your research and Ask your questions. 

Because I did those things, and people still didn’t listen. Which just makes me fight harder for him! 

Thank you in advance for reading and God bless

I also apologize for any grammar errors as this is a lot of information to get out when trying to manage his care! I just wanted people to be well informed❤️