Yesterday was the day. After waging a hard fought battle against chemo induced weight loss, Hannah and I admitted defeat. She was .1 kilograms under her weight cut off. She ate so well this week too. However, after a little over a month of being under or just at weight, it was pretty obvious that our best efforts were not going to be enough. It was a simple decision to say, yes, she needs the feeding tube.
At first it was very scary for Hannah. They had a child life specialist named, Jill, who came to help Hannah accept this new situation. She did a great job. Jill started with a cool bubble trick (she blew a big bubble, grabbed the big bubble with wand, and blew smaller bubbles into it) then moved to the guts of the visit. In the past the child life specialists were never much help and actually seemed to make it worse. They would just baby talk Hannah, and try to distract her. This lady was good. She didn't try to cover up what was about to happen. Instead, Jill gave Hannah a doll with a feeding tube to show her what was about to go down. My girl does best with lots of information. Wonder where that comes from? :-)
When it came time for the placement they asked Hannah is she was ok to start. She said a quiet, yeah, lets do it, and sat very still. I don't think you can prepare for what that feels like. Luckily, she complied in drinking apple juice to help the tube go down, but screaming and gagging the whole way. The tube managed to curl around itself instead of making it down to her stomach. They had to pull it out and start again. uugghhh.
After the tube was in the right way, the new focus was getting Hannah to breathe. It is such a weird sensation to have a tube in your nose and down the back of your throat. It was very hard for her to concentrate on breathing and not throwing up. She asked everyone to please take it out. Her face was tired and strained, eyes red, just begging us to help. It was heart breaking to say the least. I don't know how either of us made it. It is one of those, you do what you have to, moments.
If she sat still, she could ignore that gagging feeling from the tube in the back of her throat, but if she moved, it moved and she was throwing up again. (the way home was ridiculous) We had a two and a half hour class right after the tube placement on how to take care of Hannah and operate the feeding tube. I don't remember a whole lot from that. I was busy telling Hannah to be calm and focus on breathing. It was helping. Thankfully, for me, they sent written instructions and a video.
She continued to gag and throw up the whole night, but this morning she is doing wonderfully. She became accustomed to the tube feeling and no longer gags, plus she is tolerating the feedings. For some kids the dripping liquids feels so weird in their stomachs that they throw up from that. It is a whole fun process. It feels very complicated right now, but I bet soon we will be used to this as well.
Yesterday's hospital visit was a little over 5 hours. I got a couple pictures in when things were a bit calmer. This picture started off as happy, but mid snap it changed.
Watching cartoons was a big help.
Doing lots better with crackers and juice.