Tomorrow we go home!
I am 90% thrilled, 10% terrified.
My baby will be going home with a tube down his nose which will feed him 24 hours a day. His home pump, supplies, and pole were delivered this afternoon, after an extremely stressful morning where for about 2 hours, we were told insurance wasn’t going to cover any of it. But we have a kick-ass doctor who wrote a letter saying if G doesn’t have the the tube at home, he will require multiple hospital stays and could die. I guess you have to be dramatic if you want to get anything done with insurance! So we’re good, covered 100%. Whew.
Grayson is doing really well. He’s already gained a little bit of weight, and is tolerating the constant feeding really well. He did throw up twice today, but very little, and the doctors aren’t concerned. And he’s feeling better too- he’s smiling, giggling, and kicking his little legs and waving his arms as if to say, “Wow! So this is what it feels like for my tummy not to hurt! Woo hoo!”
When I asked the doctor how long she thought he’ll be on the tube, she said at least a month. She said right now, there’s a 50/50 chance that he’ll have to have surgery to place a G-tube, which is a more permanent tube than the NG tube he’s on now. Really it’s up to G- how well he gains weight, and if he’s willing to take the calories he needs by mouth (right now he’s not even close). But we’ll pray that because his tummy feels better and will be emptying at an appropriate rate, his appetite will increase.
I have a lot of anxiety about going home. The NG tube requires a lot of maintenance- I have to syringe out some of his stomach acid and check the pH twice a day, and then push it back in (eww). I have to listen to his belly with a stethoscope and push air into his tummy and listen for a swoosh sound to ensure proper placement. There’s cleaning the bags and tubing, administering meds through the tube, and of course making sure G isn’t pulling on the tube and making it come out.
If the tube comes out, I won’t be putting it back in. I just can’t do it- I’d be too scared I was doing something wrong. I’ll be taking G to the pediatrician and she’ll do it. Let’s just hope it doesn’t come out on the weekend, because then we’ll have to go to an urgent care center.
I’ve been practicing all the steps today, and am feeling pretty confident. But it’s a lot easier in the safe cocoon of the hospital with a nurse looking over my shoulder to make sure I’m doing everything right. It will be a lot different when it’s just me at home. I’m sure in a few days I’ll have the hang of it and I’ll look back at this and wonder why I had so much anxiety. I’ll look forward to that day!
But, at least we are going home. I think 10 days has been quite enough for this “vacation”.
I think this dude’s ready too!