I’d love to have all sorts of news to post today for everyone, but I really don’t have all that much new to report. There really wasn’t a ton of progress today, just more confusion as to why they can’t take Eli off of the BiPAP machine without him wheezing. Some theories are floating around and we are trying to address those as they come up. One interesting idea is that one of his blood pressure medicines is known to sometimes cause wheezing, so we are weaning him off of that and substituting with another (his last BP was 133/88). X-rays continue to be good. We are also being relentless on the Chest PTs (beatings on the back and chest) to make sure we’re breaking up whatever could be clogged up in his system.
Today was the first day that he had no nutrition since we pulled the nose tubes out to allow for more air flow (plus the BiPAP went in through the nose). Everyone agreed that he could go a day or two without nutrition and he won’t waste away. 🙂 They all think he’s just a nice Iowan cornfed kid. We have to remind them that he was on the Megace steroid for 3 months and never stopped eating! He did stand and even walk a bit today, so he’s definitely getting stronger.
Eli has been unusually quiet, but I think it is really related to a sore throat when he talks and a little bit to do with being scared about not being able to breathe on his own. It’s all pretty intimidating, but he’s taking it like the champ he is. Lacey’s parents ended up coming up to NY for a few days and even they couldn’t get him to talk, so you know something is definitely going on. He can be very stubborn sometimes, but I think it’s a part of how he copes so well. He’s too stubborn to talk, but he’s also too stubborn to give up and get weak. He’s always good about cooperating with his treatments, which tells me he has a lot of trust in us that we’re trying to help him get better. Especially when we are beating on his back with a suction cup device!
Everyone laughs at how he still has that one long eyelash that just won’t fall out. I call it “The Eyelash That the Chemo Couldn’t Kill” and now people think that I should write a book about this whole ordeal when it’s over and that should be the title. I don’t know about that, but I certainly look forward to the days of NED. That’s cancer family talk for No Evidence of Disease. We start to talk in our own language after a while, right guys? Our Iowa City friends know what I’m talking about.
We also heard from Make-A-Wish (thanks for the news tonight Michelle) that Eli’s Wish to go to Disney World was given final approval. We have zero idea on when we’d even be able to do that, but there is no rush on deciding on a time, it can be years from now if we want, they just wanted to get it pushed through the system so it was ready to go whenever we wanted to use it. It has a cool dinosaur area, so that’s why he was keen on going there to get his “dinosaur zoo” fix. 🙂 That will be fun some day, but for right now we have to work on getting off of this surgery roller coaster ride. Let me tell you, this ride really takes your breath away. Alright, sorry, bad joke, I’m getting tired. 🙂
I’ll end off with a picture of Eli on the BiPAP machine so you can see what it looks like. The cold towel on his head was simply because he had a fever and couldn’t have more Tylenol yet. It’s not a part of the device. 🙂 Thanks again for all of your prayers! Please keep them coming!
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| From New York City |
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