Oh Sam.
This guy is constantly keeping us and his medical team on our toes.
Sam finally went back to school for a few days in January. He was back two days before he was sick. I was laughed at by Sam’s home care nurses and my husband when I said, maybe it didn’t come from school. Either way, whatever hit our house, of course hit Sam much harder. He needed oxygen support for five days and we barely avoided a hospital stay. BUT we did avoid a hospital stay and that is a huge win! When Sam gets really sick, we go to straight to Pedialyte via his g-tube (feeding tube). His doctors don’t like him to go for more than three days on straight Pediatlyte. We went for four. I knew we were so close to being over the hump of being admitted. We did it!
It’s always a guessing game on whether or not to take him in. The scale I had with my other kids is nothing near the Sam scale. If we bring him in, we know we are not just getting him checked out but know we’re preparing for a hospital stay. Man, am I thankful we have been able to avoid these stays. My three things. I’m thankful for at home oxygen support, home care nursing, and g-tubes (feeding tubes).
This was the first time Sam has needed oxygen since he got his trach out. Generally, if a child is home with oxygen, they wear a nasal cannula. He couldn’t walk for five days but he had enough strength to rip a nasal cannula out of his nose. He was having nothing to do with it. For a kid who has been through so much, he hasn’t had anything on his face since he was two months old. Thankfully, we were able to get by with a ‘blow by’ method. Thankfully he didn’t need more than the 5 liters the home oxygen concentrator could give him.
His appointment with his ENT confirmed the stoma (hole in his neck) reopened. This, of course, very rarely happens. His ENT told us it’s less than a two percent chance for this to happen. His ENT also confirmed that, it’s Sam and that’s how Sam rolls. Sam does his own thing. The unfortunate part is that he will need another surgery down the road. As you know, swimming is a number one for us and him, so we hope to get the surgery on the books soon. We’re back to scary bathtimes but that’s nothing new in our world.
Sam’s GI (tummy) concerns continue to be a thing. Even after being on a med since this past summer, he still has significant inflammation in his intestines. He will have another colonoscopy and MRE (not MRI) tomorrow.
With Sam’s trach stoma (hole in his neck) reopened, sedation becomes a bit more of a concern for the anesthesia team. I am confident he will do well knowing how well he did at his last colonoscopy breathing wise.
Those of you who follow, know I am a prayin’ mama. Please keep Sam in your prayers for Friday’s procedures. We are hoping for easy, fixable answers.
