01/21/2023
As most of you all know since Brixtyn was born we’ve lived in and out of the hospital.
Brixtyn was born at 36 weeks via C Section 4 pounds. Brixtyn was born with one kidney & had his testicle caught in his appendix with a hernia. Brixtyn was hospitalized for his first time at 2 weeks old, we spent a week there for what they said was a “GI Bug” little did we know that would be the first of several stays. Brixtyn had surgery at 5 months old, as they thought this could be the reason he was throwing up all of his bottles, not gaining weight & in a lot of pain. although, it took 3 ER visits in a row for them to see what was going on and decided that could be the culprit. after a few weeks we realized Brixtyn was not getting better, they switched him to all different types of formulas & said he had severe reflux. we battled stomach issues but things didn’t take a turn for the worst until 10 months old. Brixtyn contracted E. Coli & stopped eating. Since then, my son has not ate since. we had to fight doctors here & at CMH, we finally gave up and drove to St. Louis, MO. he was admitted immediately as he was still infected with E. coli for 17 days and having severe symptoms. through all of this craziness Brixtyn has plaques that will wax and wean, they come back in the exact same spots and then more everytime they come back. St. Louis did a biopsy of the skin and said he had ”PR Rash” which was because of his infection in his stool, they clarified it wasn’t eczema like doctors had been telling us for months, that it was from all the infections Brixtyn kept contracting. We believed them and felt relief.. finally somebody had listened. they told us when Brixtyn started feeling better he would begin to eat again. sadly, that day never came. Brixtyn lived on “Soy Silk” milk. that’s all the nutrients he would get. Then came another nightmare of our son screaming in pain constantly, having white stools and random 105 fevers. his liver checked out his gallbladder checked out. they couldn’t find the issue. here again, battling the unknown. meanwhile contracting every virus that comes near. then, one day he stopped drinking soy milk. I gave him propel water and he then started drinking that (which has zero nutrients) we didn’t realize how bad his addiction came with drinking it until we started counting the ounces. he averaged about 360 ounces of propel water a day. Brixtyn was still in and out of childrens mercy & still not eating. Until, one admission Brixtyn had dropped 6 pounds within a few weeks, he was basically on his death bed. he had went 4 months before doctors decided to drop an NG tube. during all of this we kept being told “he’s a rare case” they couldn’t find his issues. they’d find little things here and there, they’d do scopes, they found in his esophagus a “Candial Infection” they then went on to tell us “healthy people do not get this type of infections” they couldn’t seem to understand how Brixtyn got it. after going home on the NG tube, brixtyn was still puking more than he was getting the nutrients. he couldn’t tolerate any feed. the GI doctor was doing numerous tests, throwing words out left and right trying to find a diagnosis. it just wasn’t there. our last admission at CMH was almost 3 weeks ago, they put a G Tube in and changed the formula to blended foods. after the G Tube surgery we decided to take him home to heal. little did i know we were walking into another nightmare. Brixtyns plaques are back and they’re in full force. CMH didn’t seem to act as if it was a big deal, our pediatrician admitted us into Omaha & they did extensive work up however most things came back inconclusive due to his young age. the tests they were running weren’t able to detect low or high results due to him being younger than 24 months. after these tests started rolling in & they realized we weren’t getting anywhere they then discussed us flying out of state. so here we are now, flying to Florida on 1/20/23 to John Hopkins Childrens Hospital.
im sure this story is all over the place as my brain is completely mush, if you’ve followed along on my personal page you know the hell we’ve been through. the admissions we’ve encountered and the life we’ve lived. we don’t get a normal life at home. we have to fight doctors for more tests. we have to fight for our son. we have the best support system that helps us through it all. 🫶🏼
we love you all. SO much!!
