G Button Choice

The last two days have been pretty exhausting. The other night when I called the nurse to tell them Emma was behaving differently suddenly, Emma still hasn't come back from that. I'm seems it has to do with some medication she's on, but we don't know for sure.

She looks different. Ashen, pale lips, dark circles around her eyes, and she rarely smiles now. Everything seems heavy. Like, she can't open her eyes fully anymore, and she randomly falls asleep throughout the day but is mostly awake. When she is awake, she clearly feels miserable. She's slower to respond, very weak, wobbly, and needs help to do everything.

She developed something new. Not sure what to call it. Almost like a tremor in her hands but sometimes different than that. Her arms have to wiggle/flap a bit, and her legs twitch and also wiggle a lot. It's like a mix of involuntary movement combined with restless leg (body?). If she's sitting on the bed, oftentimes all of her limbs are moving, and it wears her out. I spend a lot of time holding her to help provide some calm/comfort to her (she's been very distressed), and there's a constant shake to her. Sometimes it will all get really intense, and then it'll calm down to some degree. Last night it got really bad.

All of it has turned my anxiety knob up because no one can say why any of it is happening exactly (so, if you've experienced this, I'd love to know your experiences/ideas). All of her levels look good. I think it must be due to some medication, or a lack of nutrition for a while, or a combination of it all? But since we don't know what exactly, it's disconcerting.

(ETA: Regarding the Reglan, she was on it up until halfway through yesterday when I asked them to take her off and switch her back. They did, so based off of the comments here (referring to the identical FB post I made), it seems like things should hopefully get better now with this part! Thank you!)

N J T U B E

When they did the scope (for her stomach) last week, they said her esophagus was inflamed and narrowing some, and it turns out the feeding tube really aggravates the inflammation in there. She ranked her pain at a 10 last night. She won't move her head much, talk much, or lie back when she sleeps. She wants it out, but she's probably lost a total of 10 lbs? And when she only weighs 75 lbs max, that's a lot for such a tiny person to lose.

They can't get a button in until Monday, so they went ahead and started her on oxycodone to help her tolerate the pain of the NJ tube for longer. It's helped a lot, but she says it's still hurting. Oxycodone also calmed everything else going on. Like, all the usual moving she has going on is calmed, and she can relax again, which is a huge relief. She finally had a mostly good night last night. Only woke a couple times needing help.

G - T U B E F E E D I N G

Regarding the g button (it's a feeding tube inserted from the outside of her belly), Emma has agreed to get one. Hem/onc wants a G tube (which means the tube would end in her stomach), but GI suggested a GJ tube (meaning the tube would end at the start of her intestines, skipping her stomach).

Hem/onc's thought is that maybe once we get her intestines cleared, in combination with the pylorus dilation (they made the bottom hole of her stomach larger), her stomach might be able to work properly again. They also hope she'll be able to tolerate the slow rate of feed that they'll be using. GI suggested a GJ tube because she has an NJ tube, since we've proven her stomach isn't working properly, and we need to bypass the stomach.

I think they both have good ideas. To choose a winner, I've come up with a plan to aid in deciding which way to go. Each team will select a player, probably the person they want most to get rid of, and then we'll have a big cage fight between the two, out on the front lawn, where all the little children can watch and cheer from their hospital windows. Then we'll go with whoever is still standing in the end.

Actually, they explained that the button itself is one that is set to handle both tubes. So, if they try one, and it doesn't work, they can easily switch to the other tube. When GI said they wanted to do a GJ and I told them hem/onc was thinking G, he was like, "Okay, that's fine." His lack of fury probably means they won't agree to my cage fighting idea now, but I'm still going to ask.

This weekend Tyler and I will actually get to see each other! He's my favorite husband. Then we'll swap. He'll get some time with Emma, and I'll get some time with the other kids. I wish it was easier for them to come and visit her. Thankfully teleparty and facetime is a thing.

Anyway, thank you all for your messages, advice, and thoughts & prayers. They really mean a lot!

next

previous