G-tube??

It continues to be a particularly difficult road here, in regards to Job's medical trials. His NG tube has become a complete disaster. He's choking on it multiple times a day and his vomiting has escalated significantly. He's so traumatized by our attempts to reinsert it that it feels as if it's no longer an option. Even when we do get it in, he just throws it back up. And it's taking us 3 adults pinning him down while he screams and chokes and stops breathing to even try. I told the team I could try again but it feels counter productive now and they agree.

So we're trying thickened liquids again. We know that it's likely he is aspirating on thickened liquids (as he started to do in October and was still doing through December - after three surgeries!! - which is why we put in the NG tube then). Otolaryngology doesn't have much hope to offer us for the nerve reinnervation Job had done back in February 2020. It was supposed to take up to a year to begin working 

His team is trying to expedite a G-tube surgery but it's hard to make that happen as quickly as Job needs it. There's talk about just admitting to the hospital for a week or two so he can be on an IV until he can get the G-tube, as we know he has a significant aspiration history even on the thickest thickened fluids.

We're on high alert at all times. It makes me so proud! And also so worried! to know my eight year old and almost-ten year old sons can hear the differences between Job's various coughs and know when to go running for towels and a bowl he can throw up in. It makes me sob even harder to find one of them curled up in a far room crying after Seth and I have tried (and failed, lately) to re-insert Job's NG tube. What is this doing to my kids?! I hate this.

Job is an emotional wreck too. He's been so quick to cry about anything and everything that goes wrong. He begs multiple times a day for a "tummy tube" because he's so done with the NG tube.

But right now there aren't openings for an "urgent" G-tube placement. There isn't actually such a thing as an urgent G-tube placement. Kids who ultimately need a G tube are on an NG tube first. I'm calling several departments almost daily to get everyone's input and check off all boxes and advocate for Job.

Though I really didn't want a G-tube it seems to be increasingly clear that's what he needs.

Soooo. We'd love prayers that Job's lungs be protected from aspirated fluids. For wisdom to know how to care for him right now. For appointments to miraculously be available. For our older kids, especially our oldest, to cling to Jesus instead of anxiety. For Job's heart and mind and body, of course. And for God to be glorified in this trial.