Ava's Place: Friday 10/18/2013 G-tube surgery

Ava had a g-tube (gastrostomy "button") placed today. It is pretty close to her Colostomy site on her belly. They did the surgery laparoscopically through the belly button. They pull the stomach up to the wall of your skin and then stitch it to the wall. Then the hole goes from your skin all the way through to your stomach. So if she were to drink something...it would come out the hole. In the hole is placed a Mic key button. It is a port that stays in place for 3-6 months at a time. We change out the port at home. Then feeding tubing is connected to the port to be able to feed Ava. At first she will be on round the clock feeds. So, when we get home she will still be attached to a pump and an IV pole around the clock, but I am hoping that the feeds can be condensed within a month or so.

She got out of surgery about 5pm. Ava was a little cold after anesthesia, which is normal, so nurses spent a few hours trying to warm her up. She has had 2 doses of morphine, but otherwise they are trying to control the pain with just tylenol. She will start getting 7mLs into the port at 6am tomorrow, then will go up by 7 every 6 hours until full continuous feeds are met. She's on a bit of oxygen after anesthesia and with the morphine.

I went in to visit Ava before surgery. She had pulled out her NG the night before, and since her feeds had been stopped for surgery, they didn't put it back in. THIS WAS THE FIRST TIME I HAVE SEEN HER FACE WITHOUT TUBES ATTACHED TO IT! It took NINE, yes NINE attempts to get an IV before surgery. This made me very sad. I grilled the poor newbie training nurse about who was called to place it. The night IV team tried. A floor nurse tried. Then they decided to wait for the day IV team, who also couldn't get it. Finally they called life flight who wheeled her into the hallway for better light and they got one in her head..which is the worst place for an IV because they go bad the fastest. The anesthesiologist in surgery told me that the first thing he'd do was to get a new IV after she was knocked out. I told him about the 9 attempts and he told me not to worry-that she wouldn't feel a thing. When he returned her to the floor with the same IV in her head he said that his ego was bruised- I thought that was kind of funny. You KNOW Ava is a hard stick when an anesthesiologist can't even place an IV in her when she's knocked out. When the surgeon called me, she said that the surgery went really fast and that most of the time in the OR was spent trying to get a better IV. Ava was so happy this morning despite not being fed. She loved all the attention of people around her bed. It felt so wrong and like such a betrayal to send such a happy innocent baby off to pain-land...again.

Shaun and I completed the g-tube teaching course this afternoon which is a prerequisite for both parents before going home. They only offer the class on Tuesdays and Fridays and I did not want any more delays from discharge so we crammed it in though it meant not being able to see Ava right when she came back from surgery. Ivy got to come to the class and she was so good. We've already completed the colostomy care teaching. Tomorrow Shaun and I will complete as much of the discharge stuff as we can, including CPR, so there aren't any hang ups later when we are able to be discharged. If there aren't any surprises, we may be able to go home very soon. I am trying to figure out how to involve the boys with discharge and moving so that they are a part of the transition. As hard as it is here.....it will also be very hard to go home and BE home with a whole new life and set of challenges and to spend the winter in a kind of isolation from other people to protect Ava's lungs.

This is Ava before surgery today. NO TUBES ON HER FACE!