And now, the Weekend Update with your host Aaron Horn. Sorry, I’m no Jimmy Fallon. Besides the Spiderman visits (yes, there was another one yesterday, but neither Mommy nor Daddy were ‘around’ for that one, Eli was all by himself and handled it just fine), this weekend was pretty uneventful. We are noticing one thing about Sloan compared to Iowa City. This hospital dies on the weekend. In Iowa City, you rarely even knew it was the weekend because it was “business as usual” and if you did know, it was probably because there were EXTRA activities going on. Here, waiting rooms shut down and are no longer accessible and there is zero activities going on.
In fact, when coming back from the Ronald McDonald House tonight, Lacey was stopped with Isaiah by security and not allowed to even go upstairs because “the baby was too young”. I had to come down and get him from her so she could go up to visit Eli. Feeling that was a bit ridiculous (as we had not had any problems making the swap on the 9th floor before), I asked the security guard what the problem was. Probably not the right way to phrase it as I got the stereotypical “New Yorker” attitude I’ve been waiting to hear this whole trip. Eh, it was ok, I probably gave it to him first. 🙂 When I got back later to make the swap again, he was still there. I told him I was heading to 9th and he said (imagine this in your best “fuggettaboutit” accent you can think of) “Hey, haven’t we been through this before?” Luckily for me, I know where the lesser known elevators are and found my way up to 9th floor. It’s bad enough Eli is on isolation and can’t be in the same room as his brother, but when we are being told to leave Eli by himself so we can make the swap in the downstairs foyer, that’s where I draw the line. Maybe it’s just built up irritation from having to wear this mask and gown for 5 days. 🙂 We’re hoping they’ll clear him tomorrow. Especially now that he is feeling better and could go play in the mega-playroom or something fun like that.
We officially had Eli off of the BiPAP for about 10 hours today. They wanted to put him back on tonight while he slept just to be safe, but tomorrow they are going to go for having him off for good. His breathing has been sounding really good and all of his vitals and oxygen levels have been good. As they say, “We’re definitely improving, slower than we would have hoped, but improving.” He was definitely more talkative today and was even laughing a bit. Unfortunately, he was also throwing up quite a bit as well, usually as a gag reflex after his oral medicine. They are trying to wean him off some meds and are wondering if the weaning is causing some minor withdrawals, but either way they aren’t overly concerned with it. Over the next few days they are going to try to take away the nutrition via IV and see if he can start eating and drinking on his own.
ChildLife stopped by yesterday and gave Eli a Halloween costume. Anyone care to guess what he got? Yeah, Spiderman. Spiderman came by later and was pretty impressed. 🙂 Since we’ve seen all 11 movies that we’ve packed 3-5 times each already, I hooked up the Nintendo Wii and we had some fun playing with that. Once he got sick of that, we used the Wii and the Wi-Fi connection here to pull up YouTube and watch some Smurfs as well as some of his videos (his favorites are the ones with Spiderman unhooking his tubes and him opening his Cyclone football). It was a nice thing to see him off of his breathing tube today for sure.
I keep asking Eli if he knows why we’re here and he says “To make me better.” How right he is. It feels good knowing that the tumor mass is out of his little body. I try to relish in that when I get bogged down with trying to figure out how we’re going to get it out of his bone marrow. Key ingredient = Prayer, and lots of it.
“Good night, and have a pleasant tomorrow.”
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