Many have been following the amazing story of Jason Preuss, the baby diagnosed with Spinal Muscular Atrophy (SMA), a rare disease that if left untreated is fatal. The last update on Jason was a good one, with him at home after receiving his “designer genes,” Zolgensma, and making great progress. Unfortunately, this update is not as uplifting and the family could really use some prayers, good vibes, whatever you have.
Sunday, Feb. 21, found baby Jason and his parents rushing to the Great Falls Benefis emergency room and from there being flown out to the children’s hospital in Seattle. Jason’s oxygend level had dropped, prompting his parents to get him immediate medical attention. Upon arriving in Great Falls, it was quickly determined that Jason needed more help than what Benefis could provide and he was flown out to Seattle.
“I’m not entirely sure what’s going on,” said a Facebook post from Gabby Preuss, Jason’s mom, on Monday. “He looks stable. Last night it was said that his lungs have a bit of secretions, but not as bad as the doctor had originally thought. He is heavily sedated and comfortable now.”
Flying out of Great Falls on Sunday was difficult in itself, with the high winds making it a treacherous journey. At one point it was thought Jason might be flown to Salt Lake City instead of Seattle, due to the wind, but they were able to fly him and his mom out west. Upon arriving another problem was discovered.
“All I have to say is this boy deserves a freaking unicorn for his first birthday,” starts Monday’s update post on Facebook.
“Update: G-tube was pulled out sometime during the flight, we aren't sure when or how, but it was. They can not get it back in but have a catheter tube in to make sure stoma isn't closed. They are currently trying to dilate it by upping catheter size in hopes another G-tube can be placed. Worst case scenario is Jason goes in for surgery to widen the stoma to get another tube placed. Currently he has an NG tube in to start feeds, but since his stomach is empty it was difficult for nurse to make sure it was where it's supposed to be. X-ray is coming up in about 10 minutes to ensure placement to start feed.
“Pulmonology wonders if this isn't just a common cold doing this, he tested positive for rhino/enterovirus on Tuesday, as well as last night, but they are also wondering if he aspirated some of a feed, which settled into his lungs. Part of his upper right lobe looked like it may have collapsed a bit, which may be concerning, but not super concerning.
“Plan is to let him rest today, make sure his vent settings are perfect and his lungs become clear and hopefully extubation tomorrow evening or Wednesday. We have an SMA pulmonologist who doesn't want him intubated for long, getting his body accustomed to the vent, so the sooner its out and he's transitioned to bipap, the better.”
As of Tuesday afternoon, it was decided that extubation is not happening today and Jason’s doctors are thinking he will have to go into surgery to re-insert his G-tube. The family has no known discharge date at this point but currently baby Jason is still sedated and stable.
Jason’s father, Glen, and his siblings have all made the trip to Seattle to be with him and mom. Being there to support each other through this is vitally important but also will put added strain on an already tight budget. The GoFundMe account is still active and can be found online https://gf.me/u/y7x9xq or you can mail or drop off a check to Glen and Gabby’s checking account at Bear Paw Credit Union, P.O. Box 906, Shelby, MT 59474.