Meet Jayson. Like many new moms I sought out the companionship of other moms-to-be on the internet. The group I am part of has wavered around 200 members, give or take. When you put that many new babies together there are bound to be some health issues. As a whole we have been a very lucky group of mamas, but there have been a handful of babies with health issues. The most notable of these is Jayson. Just to leave the house he has to have an oxygen tank, food pump, and plusoximeter. They don’t leave the house much.
Jayson was born toward the end of December, everything was normal. By the end of February he had been admitted to the hospital with RSV. By this time they had also done genetic testing to rule out any other kind of disorders and everything came back normal. Since that time it has been one thing after another, with no answers. Jayson will suddenly stop breathing, or just vomit continuously. For over 2 months now they have been jerked around by doctors and hospital staff ignoring their concerns, disregarding charts, and simply not paying any attention.
Recently it was decided that Jayson had a very severe form of laryngo-tracheomalacia. His epiglottis was folding back over his airway whenever he would eat. After surgery to fix this, there was no improvement. His condition escalated to include, what appeared to be, seizures. This was yet another symptom that Jayson’s doctors ignored.
Jayson is now four months old and cannot eat on his own. His brain forgets to tell him to breathe. His parents finally found a doctor who honestly cared about their baby. He watched the video that Jayson’s mother had taken during one of his episodes, and immediately ordered an EEG. This doctor reluctantly told them that if they wanted to put a name to what was wrong with their still brand new baby boy they could call it cerebral palsy, but that that is just a vague term, and does not identify their child.
Jayson still needs a lot of help. There isn’t a specific treatment plan in place, and there are still frequent trips to the emergency room for various things. Right now Jayson’s Mom walks around in a haze, trying to remember how to live her life day to day. While she is at work all she can do is think about her boy, and how everything else seems so trivial when compared to his battle.
Ideally we would like to see Jayson’s mother with him every moment of every day. There is no way to know what each moment will hold for Jayson, and she deserves to be there for it. While that is rather unrealistic, helping to cover the co-payments that are adding up with every weekend or evening trip to the emergency room is not. We’ve set a goal of $1500 to help them with the rising costs of Jayson’s care. Every little bit helps.
Thank you for listening to this short version of Jayson’s story. If you’d like to know more his mother blogs here.
Please keep Jayson and his family in your thoughts.
There is a paypal account setup at KimmyJaneTD@Gmail.com if you would like to donate to Jayson’s family.