We were hopeful that John would be in a great spot today and ready to go home, but that sadly isn’t the case. He’s remained on IV steroids at the highest dose possible, so how he looks today is as good as he’s going to look for the time being..

John’s breathing, overall, is pretty good. He sleeps very soundly and is very calm. When he’s awake, he generally breaths through his mouth with ease. The real issue has become his ability to breathe well enough to eat without choking (or eat at all….) There’s great concern that (because his breathing is so rapid and erratic) he is constantly aspirating but has conditioned himself to basically not care. Over the course of the past few months, he’s learned that eating is the priority even if it means eating too fast and choking along the way. This type of repeated behavior can have detrimental effects on brain feedback with the GI system/ lungs, and could basically teach him that repeated choking is okay. His intake has been on the lower end of their recommended amount, and that’s on his really good days. On his bad days, his intake is well below what he needs to even be hydrated, and is certainly not enough to support any real weight gain. As of late, we’ve had a lot more bad days than good. 

After months of fighting it, constantly making adjustments to his bottle, formula, concentration, thickness, the feeding therapy, incessant manipulation of his nose, and pushing his body to a point that would mimic running a marathon- the time has come for us to take this burden away from him and proceed with a G tube. For the time being, it’s vital we focus on his breathing and eliminating the work required for him to eat can hopefully help us avoid a trach down the road. 
This will also let us control the amount he gets, and hopefully can expedite his growth which is the only true “fix” for his compromised breathing. 


This decision isn’t something we take lightly, but after months of fighting it and pushing his little body, this feels like the best move. It isn’t exactly a fix, but another bandaid, and will require another surgery, more doctors appointment, more equipment, double the time to go anywhere, limitations with his day-to-day, and inevitably he will get it pulled out at some point and it will have to be replaced. 
Once he has his G tube (which is directly connected to his stomach, through his skin, and will sit just below the bottom of his ribs), he will still be able to drink when his breathing allows and will let his start eating purees “for fun” in the next month or so. 

We’re at peace with this decision and pray that it’s helpful for him in the long run. The procedure won’t take place until (hopefully) early next week so he will remain in the hospital to stay on IV fluids until then. 

Thanks for thinking of him. 🩵 we’re so grateful.