Surgery

Yesterday the GI doctor came in to do rounds in the morning. Every week it changes who this is. This week it turns out it’s Ralph Macchio from the Karate Kid. So, we knew we were in good hands. (He seriously looks so much like him!)

P365/4: Sleeping Emma

They took Emma down around noon and did the usual prep stuff, and then they went to give her some Versed, but the IV didn’t work. Also, I double-checked that they were placing a GJ tube and not a G tube, and it turns out they had it down for a G tube. So, they had to go get both things fixed.

Maybe 20 minutes later, new IV was in & paperwork was correct for the GJ button, and they were good to go. So, the nurse came back in and gave Emma her Versed. About five minutes later, she got a call to inform her that the surgery was being pushed back by an hour. There was a flash of “oh crap” that crossed her face, as she realized she just gave Emma Versed for literally no reason. That meant that Emma was going to be high for the hour while we waited, which hit my funny bone, and I couldn’t stop laughing.

I know most of you are probably familiar with Versed (ver-said), but if you’re not, it’s a drug that makes you super loopy. The overall goal is to calm anxiety and reduce memory of unpleasant experiences. It makes you behave in some funny ways, too. So, for the hour that we waited, I watched Emma, who is usually very quiet and well behaved, play with her arm like it was a separate toy, do “magic tricks” that always ended up with her middle finger in the air, pull her ID bracelet off in a really funny way and then threaten to drop it on the ground, try to stick a rolled up paper towel up her nose, not realizing a mask was in her way, then watched her drop a variety of things down the front of her hospital gown like it was a garbage can (like shredded pieces of a paper towel, the hospital TV controls, her blanket), and she would randomly bark and make other strange noises.

About five minutes before they came to take her back for surgery, it seemed to wear off, she pulled everything out of her “garbage”, and she went back to acting more like herself. It made it all the more funny that she basically went on a Versed trip for no reason. (Though, I’m hopeful it was still working to some degree!) I went off and waited while they did the surgery. Then about an hour later, Ralph Macchio came out, told me they were finished and that everything went great.

Then, later, when they had her back in her room, they had to place another IV! I felt soooo bad for her. We really miss the days when she had some form of a central line, which has been most of the time for her. These IVs are lame.

T O D A Y

She slept most of the time since surgery until late this morning. It’s been quite painful for her, so she’s been taking oxycodone to help. The medication and pain makes her incredibly grumpy, but also, she’s still really upset that she has to have this. She already wants the button out now and doesn't want it to stay there. There’s a lot of grief in there over her life in general with FA (which surfaces a lot more with medical stuff), as well as how this (new, unexpectedly medical issues) never seems to end. I wish there was a way to take it away from her and do it for her. I know Tyler feels the same way. It’s hard to watch her wrestle with it all mentally and emotionally. She's in a tough headspace right now.

They’ve had her on pedialyte since surgery (through the j tube) and just changed her back to the formula at 10 ml an hour. They’ll be increasing it incrementally. I think they’re going to try to get it up to 80 ml an hour (2.7 oz). The hope is to condense her feeds down to less than 24 hours a day. We also need to try to get in 600 mls of water (20 oz) in in addition to the 32 oz of formula. This is not something we were able to accomplish with the NJ tube. But we’re hopeful that maybe it’s something as simple as the tube being in a slightly different spot that will help her tolerate it better. This will allow her to go without an IV and to get all of her nutrition through her button.

(EDIT: It's actually 40ml an hour, not 80, that they are trying to get to, which would then run 24 hours. Also, they are incrementally increasing it by 10 ml every 12 hours.)

If we can do this, then we’ll possibly be able to leave on Thursday. If we can’t, I guess we’ll go from there and figure that out.

Oh, and the hem/onc that is on this week thinks that it likely isn't due to GvHD that all of this is happening (contrary to other hem/onc). GI agrees. They all say it's totally possible, but they aren't seeing any signs of it. They don't know why it's happened. Oh well. I don't think we'll likely ever understand why.

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