I’m posting this for my beautiful friend, Rachel, and her husband who are going through a terrible nightmare. Brandon is an elementary school principal, and Rachel is a middle school teacher in our community. They have two very active boys – 4th grade and Kindergarten.
Brandon woke up in May with swollen legs...went to the ER and they advised him to elevate his legs and stay hydrated. Nothing improved. He was having trouble eating and didn't have an appetite – he lost 20 pounds in 3 weeks. In the middle of June, one leg hurt really badly and the other didn't work. He was checked into the hospital and the blood work showed his CK enzyme was 22,000 – it should never be above 300. He quickly lost the ability to swallow and couldn't move his arms or legs. NCH didn't have any possible answers...they sent a leg muscle biopsy to UF, and it was concluded that Brandon has a rare condition called Necrotizing Myositis. His white blood cells are attacking his muscles at an alarming rate.
Once they gave him a few treatments, they sent him to an extended care facility, where he was basically in a holding pattern while his body was still attacking his skeletal and smooth muscle. They said because all of his vitals were stable, he no longer required hospital care, yet he couldn’t go home because he was paralyzed. He lost his throat muscles, stomach muscles and all skeletal muscles. He developed pneumonia and was sent back to the hospital. NCH wasn’t treating him, yet they refused to approve a transfer to a hospital outside of town; however, Rachel found someone who could drive him to Tampa General Hospital where he remains.
He has lost a total of 68 pounds and has been transferred to and from the ICU several times. He keeps developing pneumonia because he doesn’t have the muscle to cough and swallow. They finally moved his feeding tube from his nose/throat to his stomach, so we are hoping he can increase his calorie intake which will make him stronger. Without the feeding tube down his throat, the hope is that he will be able to improve his ability to swallow. His muscles are so weak that twice now, while trying to stretch his arms and legs, he developed hematomas and began to bleed internally. Both internal bleeds have been repaired, but it shows how truly fragile his body is.
Rachel is trying to be in two places at once – with Brandon in Tampa and her boys in Naples. We are asking for any help we can get for this family. If you can, we would be forever grateful for any help you can provide. Thank you from the bottom of our hearts.