Well, we had an answer to prayer yesterday as the beta glucan arrived! They called around 4pm and said to come and get it, so Lacey immediately made a dash for the hospital to go pick it up.
You aren’t supposed to eat for an hour before and an hour after you take the beta glucan, and it is supposed to be given within an hour of starting, so we gave it to him around 5pm hoping he’d be done by 5:30pm so we could all go down to dinner at 6:30pm.
Eli is very particular about oral meds, he has a mental hurdle that he has to get over because he thinks everything is disgusting and will make him throw up, even before he tries it for the first time. We kept assuring him that it tasted like NOTHING and that it was like water, but he wasn’t buying it. He said he could taste it. Lacey and I actually tried a few drops left over in the bottle and it does, in fact, taste like nothing. It wasn’t as thick and Jello like as we had expected and it was slightly over 4 oz of liquid he had to ingest. I think the idea of being forced to drink something, regardless of it being 4 oz of tasteless liquid, is what bothers him and creates drama.
At first we thought we were going to need to request an NG tube be put in on Friday because he was arguing so much and taking such small sips, but after 15 minutes or so, he started drinking it much better and actually finished by 5:30pm. They allow the kids to suck on a sucker or hard candy while they drink it to help give some flavor, but no eating or drinking of anything else. 1 day down, 16 to go!
If you’re interested in learning more about beta glucan, check it out on Wikipedia.
The pain from the surgery has seemed to decrease quite a bit. He only complains when we pick him up because of the port’s proximity to his right armpit. It’s actually a double lumen port, so there are two little ports connected to one line going into one of his major blood vessels. He has only asked for the Codine once, otherwise he doesn’t really need or want it. It’s a sizeable pill that we cut into fourths and he’s able to take it. We’re pretty excited about this new development of being able to take a small pill instead of having to deal with liquid meds! The bandages get to come off today and if he wants to take a shower, he can. He can’t swim for another week and a half, but once he can, we’ll probably be looking for the nearest NYC pool!
Eli’s radiation tattoos are small, but noticeable. It would definitely be enough to breech the Levitical law (Leviticus 19:28). Glad we’re not under that contract! I’ll take the New Covenant any day. If you would have asked me a year ago if I’d ever give parental consent so my son could get a tattoo before he was 18, I would have laughed at you.
So, we are experiencing something in NY that we haven’t really seen yet. It’s called snow and it’s coming down in big flakes! I know everyone in Iowa is breaking out their tiny violins. Yesterday it was chilly, but sunny. We decided to check out a movie (The Spiderwick Chronicles) and walked a mile with the boys to the nearest theater. It was cool to see a theater that was actually multi level, but uncool to see a theater with NY prices and no concept of “matinee” pricing. $11.75 for adults and $8 for kids, but at least they didn’t charge us for Isaiah! It was worth it, I don’t know the last time we went to a movie in the theater and the movie was really good, but kind of scary in parts (thus the PG rating). I have found www.kids-in-mind.com a good resource to use before checking out a movie.
I’ll fill you in on any happenings over the weekend. Otherwise, please be praying about Monday. 3F8 officially starts and will undoubtedly be painful for Eli. 🙁
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