This is our son Salias. Despite having only been here for a short time, he has already had to be a warrior.
When he was just 12 days old, we were awakened by a shrill cry, and when we pulled him out of the bassinet, he was struggling to breathe. He turned completely blue multiple times and went unresponsive twice. Once at the hospital, they diagnosed him with BRUE (Brief Resolved Unexplained Event).
Since then, we have witnessed these events countless times. Doctors are not taking this seriously. Salias's uncle passed away from SIDS at just 4 months old and went through the same experiences prior.
We have found out Salias has a very rare pressure-induced mass in his throat. (This balloons up, seemingly cutting off his airway when he is crying, straining, bearing down, etc.) There are only 42 reported cases. They tell us there is not enough literature to know if that is the cause of his issues.
He has gone through extensive testing and imaging so far, with multiple abnormalities found, but they claim these are no cause for concern. We have used up all local and semi-local medical resources. We may need to utilize out-of-state care.
However, we cannot fly due to the mass in Salias's throat. No one can let us know if the pressure on a plane can cause it to swell, which would result in cutting off his airway for an extended period of time. We just want to find answers for our little boy.
No parent should have to watch their child struggle time and time again to breathe, and watch them turn blue or go unresponsive. Despite multiple hospital stays for these episodes, doctors are being so dismissive. We keep being told he may outgrow them, but every time he reaches that age, they just push it further. That is why we want to expand our horizons to actually help get Salias the care and diagnosis that he needs and deserves.
So far, we have seen multiple specialists including but not limited to: pulmonologists, cardiologists, ENTs, neurologists, and more. All have seen the issues and have dismissed him anyway. He has been diagnosed with BRUE, Apneas, a patent foramen ovale with shunting, pulmonary artery stenosis, branch, peripheral (beyond the hilar bifurcation), seizure-like activity, upper airway abnormality, the mass in his throat, and more. Yet they have still continued to dismiss him as well as our concerns. Even with their tests and studies, they just brush it off even when things are found.
In the meantime, we have had to deal with these episodes, and each one seems worse than the one prior. He still turns blue in his sleep, and you cannot see him breathing. Luckily, startling him gets him to breathe again, and you can see the color wash back over him. Sometimes he will be fine, then stumble, start to turn blue, and be very stiff in my arms, then continue turning darker blue and purple from head to toe and go completely limp and unresponsive, therefore needing CPR. These events can happen at any given moment, and each one is still as terrifying, if not more so, than the ones prior. We are still beyond paranoid that we will not get him breathing again or that it will go unnoticed in his sleep.
This is why we have given up on the medical field. They have done nothing but bankrupt us and make us lose our faith in them. Our baby boy suffers, and we can only witness and intervene when we can to ensure he still has a life to live.
We did take the advice of many, as well as Dr. C (Dr. Craig), and have gone out of state to see a chiropractor who specializes in the Blair technique. He thought he could help him, especially because we had exhausted all of our medical resources. He started by actually listening to us and our concerns. We explained everything going on with Salias and how horrifying these past two years had He then was testing all of Salias's reflexes and doing his own testing. With each of his tests, his one leg was coming up much shorter. He then used a tool which was so gentle it didn't even feel as hard as a finger poke. He tapped his C1 right. Instantly, Salias's legs were both the same length.
After we noticed he still had some issues but not as many episodes. Mainly, when he was crying, he didn't turn as blue as he once did. (Yes, we do understand a crying spell isn't the same as his apneas, but he was still turning blue when crying).
However, he still does have issues and still stops breathing in his sleep often, with visible cyanosis.
We are praying this can eventually be a thing of the past and we can actually breathe and live a normal life without the constant worry of him just stopping breathing randomly.
We have depleted all of our savings and have become bankrupt from giving our all to the medical field, with no avail. As much as we hate to ask for help, we don't know where to turn, as we are even fighting homelessness right now because of this financial hardship.
In order to continue Salias's care, we have to travel out of state. Not only do we have to cover the traveling expenses, but the appointments as well.
Right now, it feels like we have only gotten by with all of your help, prayers, and by the grace of God.
We are raising enough to cover expenses for everything upcoming, as we have completely depleted our savings for Salias's care so far. Please find it in your heart to give whatever you can.
Thank you in advance for your generosity. We know you will help as the Lord enables and leads.
Please and thank you so very much!
God Bless each and every one of you!
