(no subject)
Yeah, so this week has been an adventure.
So yesterday we took Scotty to his appointment with the feeding specialist. He had dropped a full pound since the last time we were in. Soooooooo, the doc came in and broke the news to us that we wouldn't be going home. They took us right upstairs and admitted him in the pediatric ward.
So I can tell you what the game plan is for right now. But apparently the game plan shifts depending on how he does. They're saying that he'll have a nasal feeding tube for several months. He'll get formula fed through the tube five times a day. He can also eat and drink through his mouth. So we still encourage him to eat and drink normally, but now the pressure is off because we KNOW he's getting all of his calories through his nose. Eventually his weight will go up enough that they'll be able to take the tube out and let him just eat like a normal person. He'll still be able to do everything...he can play...he can go to Kindermusik....he just does it with a tube in his nose.
OK, so they admitted him and got us moved into a private room. After a good long wait, they took us all to the procedure room to insert the feeding tube. Holy shit...that was one of the worst experiences of my life. I laid back and held him in my lap. They'd wrapped him up in a sheet, and then I clamped my arms around him. Even with that, it still took me and three nurses to hold him down. He screamed so loud that his voice finally gave out....and so hard that he ruptured blood vessels in his face and neck. They tried four times with the normal sized tube, but they couldn't get it in. So they finally had to bump down to a baby sized one. So, on try number five, that one went in and they got it taped up onto his cheek.
Good lord was he upset. He cried off and on and clung to me for an hour or so. And then the nurse came by and made it alllllll better by giving him toys. They have two playrooms where he can go and play, or where he can just grab toys and take them back to his room. They also have wagons and a little riding car that he can prowl the halls in. Not just the halls on our floor either. We've toured the whole damn hospital in that thing. Plus OHSU (Oregon Health Sciences University) and Doernbecher's (Childrens Hospital) are connected by a sky bridge, from which you can see the sky tram that ferries people from the lower facility to the upper one where we're at. We've been patrolling that bridge all day. The nurse also let him pick out a handmade blanket to snuggle with that he gets to take home with him. He chose the John Deere one with the tractors. And they gave him a set of hotwheels that he gets to keep. And they randomly leave toys for him while we're out. We came back in today and discovered a truck that they'd left him. They also have art classes and they had a big bingo game going today. And he has his own tv. And bathroom. All in all, it's a cool place. You know, other than the nose tubes and stuff....;-)
So now we're in the "learning" phase. Today I got to hook him up to the pump that will run his formula through his tube, and unhook him, and flush the line with saline. Then for the next feeding I got to pump it in by hand with a syringe (kind of the backup plan, just in case). They were also going to teach us to reinsert the nose tube in case it gets pulled out. But now they're thinking that we probably wouldn't be able to do it since they had such a hard time getting it in. If it comes out, or when it needs to be changed, we'll bring him back to have it done.
So hopefully we'll be home on friday. We'll get hooked up with a home health group who will bring the equipment that we need to the house and supply the formula for him. In the meantime, obviously we have the laptop with us.
And that's it for now. Scotty is wanting a turn on the computer, and his dinner is coming soon too....the solid one, not the liquid.
So yesterday we took Scotty to his appointment with the feeding specialist. He had dropped a full pound since the last time we were in. Soooooooo, the doc came in and broke the news to us that we wouldn't be going home. They took us right upstairs and admitted him in the pediatric ward.
So I can tell you what the game plan is for right now. But apparently the game plan shifts depending on how he does. They're saying that he'll have a nasal feeding tube for several months. He'll get formula fed through the tube five times a day. He can also eat and drink through his mouth. So we still encourage him to eat and drink normally, but now the pressure is off because we KNOW he's getting all of his calories through his nose. Eventually his weight will go up enough that they'll be able to take the tube out and let him just eat like a normal person. He'll still be able to do everything...he can play...he can go to Kindermusik....he just does it with a tube in his nose.
OK, so they admitted him and got us moved into a private room. After a good long wait, they took us all to the procedure room to insert the feeding tube. Holy shit...that was one of the worst experiences of my life. I laid back and held him in my lap. They'd wrapped him up in a sheet, and then I clamped my arms around him. Even with that, it still took me and three nurses to hold him down. He screamed so loud that his voice finally gave out....and so hard that he ruptured blood vessels in his face and neck. They tried four times with the normal sized tube, but they couldn't get it in. So they finally had to bump down to a baby sized one. So, on try number five, that one went in and they got it taped up onto his cheek.
Good lord was he upset. He cried off and on and clung to me for an hour or so. And then the nurse came by and made it alllllll better by giving him toys. They have two playrooms where he can go and play, or where he can just grab toys and take them back to his room. They also have wagons and a little riding car that he can prowl the halls in. Not just the halls on our floor either. We've toured the whole damn hospital in that thing. Plus OHSU (Oregon Health Sciences University) and Doernbecher's (Childrens Hospital) are connected by a sky bridge, from which you can see the sky tram that ferries people from the lower facility to the upper one where we're at. We've been patrolling that bridge all day. The nurse also let him pick out a handmade blanket to snuggle with that he gets to take home with him. He chose the John Deere one with the tractors. And they gave him a set of hotwheels that he gets to keep. And they randomly leave toys for him while we're out. We came back in today and discovered a truck that they'd left him. They also have art classes and they had a big bingo game going today. And he has his own tv. And bathroom. All in all, it's a cool place. You know, other than the nose tubes and stuff....;-)
So now we're in the "learning" phase. Today I got to hook him up to the pump that will run his formula through his tube, and unhook him, and flush the line with saline. Then for the next feeding I got to pump it in by hand with a syringe (kind of the backup plan, just in case). They were also going to teach us to reinsert the nose tube in case it gets pulled out. But now they're thinking that we probably wouldn't be able to do it since they had such a hard time getting it in. If it comes out, or when it needs to be changed, we'll bring him back to have it done.
So hopefully we'll be home on friday. We'll get hooked up with a home health group who will bring the equipment that we need to the house and supply the formula for him. In the meantime, obviously we have the laptop with us.
And that's it for now. Scotty is wanting a turn on the computer, and his dinner is coming soon too....the solid one, not the liquid.