Favorite Hannah Picture

Favorite Hannah Picture
"Yes, the park!"

Hannah Ballerina

Hannah Ballerina

Play Time

Play Time
"Go super fast!"

Hannah's Room

Hannah's Room

Happier Hannah

Happier Hannah

Hannah sleeping 4-13-10

Hannah sleeping 4-13-10

Preschool Friend's Art

Preschool Friend's Art
Yeah! Friends!

Friday, September 17, 2010

Food? Through a Tube

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.

7 comments:

  1. Oh, oh, oh. Hannah, you brave girl. Just reading about this experience made me gag. Oh, darling girl. I am praying for you.

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  2. You are very brave, indeed, Hannah! As is your amazing mama. Hugs to you both for getting through a difficult day. I hope the feeding tube gives you more energy and strength going forward. Kathy

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  3. I can't imagine how awful these times must be for you, but what a superstar she is. So brave, and her mom too. Here's hoping that the feeding tube is soon doing its job and making her good and strong so that she can get some more good ballerina twirling action going on. Much, much love to you x

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  4. I can't imagine how awful it must have been to get to the point of having medical devices like this. I hope you both are feeling some relief now that the tube is in.

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  5. She is a brave girl. I don't know if I feel relief yet. I have been trying to wrap my head around how sad I feel. I think the visual appearance, being tethered to an IV pole, and all that goes with the NG feeding tube are hard reminders of how sick she actually is. I do appreciate the nutrition it is giving her.

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  6. She is such a tough girl. Go, Hannah! She (and you) are an inspiration.

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  7. If you have questions about the tube feeding, or want to talk to parents/kids who are experienced tube feeders — don't hesitate to call on the Oley Foundation. We are a non-profit that offers information and peer support to families dealing with home tube and IV feeding. Our web site is www.oley.org or call at (800) 776-OLEY. Everything is free of charge for patients and their families.

    Best of luck on your difficult journey. Hannah sounds like a terrific kid.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff member
    dahlr@mail.amc.edu

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