Lexapro & GJ Button

Thank you all for you ideas on what might be wrong with Emma's muscle control issues. On Sunday, I sent the video of Emma to her hem/onc, who then sent it to psychiatry and neurology. They all felt like it might be caused by Lexapro (which many of you suggested), so we've stopped that medication. The last time she had any was on Sunday. It's Wednesday now, and she's still having waves of uncontrolled muscle movement, but it seems to be getting better. It's a bit more mild. So, fingers crossed it'll be gone soon.

P365/7: I know they look super serious here, but they were actually laughing a lot and being pretty funny together. Emma's arms were going crazy. She kept trying to sit on her hands to keep them under control, but she couldn't keep them held down. She kept looking at them like they were crazy (which part of the face you're seeing from her). Violet sat down to help hold her arms down until it passed.

F E E D U P D A T E

Yesterday we finally got her all of her water + feeds to the full speed/amount needed. When I give her the water boluses, she feels like she's drinking. Like, it gives her that satisfaction, and sometimes she'll start swallowing like she's drinking, only to make a weird face and comment on how her body gets confused and thinks it's drinking. haha. It makes her laugh. It's interesting! If left on her own, she'll only drink about 1/2 a cup of water. So, I give her water every hour since she can only tolerate a certain amount each time.

G J B u t t o n s

It's amazing to us how many people have little buttons. If you're getting a GJ button, too, and are curious what it is, or if you like details of all things like I do, I thought I'd show you Emma's stuff. (I'm also working on a photo-a-day/P365 project. I didn't decide to do this until yesterday, ha, so that's what the P365 means and this will include some catch up photos.)

P365/3: It was a little confusing at first, figuring out how to organize all of her new meds and not getting the syringes confused. We pretty quickly made a better system than this. Labels for each syringe and medication sheets made for morning, noon, and night, so we can keep it all organized.

P365/5: Violet gets up early to help me prepare everything. She's learned how to measure meds and give them to Emma. She's really good at it. (I always double-check everything, but so far she's always done it right.)

P365/7: This is what her GJ button looks like. There are two ports: G (gastric/stomach) and J (jejunal/intestines). Then on the inside is one long tube that goes through her stomach and ends in her intestines. The top part of that inner tube is the G and the bottom of it is the J.

P365/8: This is what her GJ button looks like without the gauze. The little round discs are stitched in place to help secure her button in place and not let it twist around. They'll fall out on their own. We change the gauze every day, which stresses her out a lot. It's gotten a lot less painful as the days go by.

P365/9: We give her feeds & medications through the J port, and we give her water through her G port. To do that, we move the extension tube (the tube that comes from her belly) from one port to the other. The extension tube is maybe 12 inches long and connects to the long tubing that comes from the feed bag, which hangs on the IV pole. The extension tube has two ports, too, so when she's connected to her feed, and we need to give her meds, we can just use the other port to push the meds in.

P365/10: Violet also likes to help prepare her feeds. The pump is suuuuuper basic to use, not too much harder than using something like a blow dryer).

P365/11: And that's it. When she's done, she gives a mostly-sleeping Emma a quick hug.

It's wonderful that they've come up with buttons to help people when needed, but I really feel for those of you that lose the ability to feed yourselves like normal and your bowels stop functioning properly. It's pretty life-altering. Emma is still struggling with it emotionally. She'll sometimes watch me push the water in, the realization that this is her life now hits her, and you can see the grief all over her face. It makes you realize what a gift it is to simply be able to eat.

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