Xavian is now taking an assortment of chemo and rescue/flush medications. He's on day two of Etoposide, day two of Cytoxin, and day two of Mesna. He's also taking Zantac for reflux and to calm his stomach, Mylicon to help with gas, and Keppra, his anti-seizure medication that he started three weeks ago in PICU. He's also taken Tylenol and Benadryl frequently. He's also had a fair amount of anti-nausea medication. Seems like a lot for such a little one doesn't it. I think so too.
The past few days have been challenging. Xavian has been quite fussy at times. He's gotten a rash on his stomach that they knocked out with Benadryl. He's had some pretty strong gas, which makes him quite angry. He's been congested for a few days and has spit up some clear, mucus type stuff, which makes him angry. He seems to have been quite nauseated at times and gets very frustrated when they try to take his blood pressure by placing a cuff on his leg, which makes him angry. He's been very fidgety at night, which makes mom and dad's nights very long. At times he doesn't even want to be held, he just wants to lie in his bed with his Crib Aquarium music going. When it stops playing, he immediately wakes and lets us know that it needs to be reset!
The hardest part right now is that we have to play the guessing game to figure out why he's grouchy and/or not sleeping. He can't tell us what's wrong, he's only three months old. It's challenging to transfer him to Cassie's lap to nurse because he's got a tube coming out of his chest with another tube from the IV pump attached to it. It's basically a two adult job at this point, which makes it extremely hard for us to post to Facebook and our blog, so our apologies for that. Cassie or I try to get away for a few hours at least once a day to stay sane. Right now it's very challenging for us. Hopefully we will be discharged Monday and can see if being home makes things a little easier. We're praying it will.
So, we are fighting this with all we have. Our family, friends, and strangers have helped in so many ways: Prayer, Planning, Moving our Home, Thoughts, Gifts, Cards, Support, Encouragement, and Personal Sacrifice. As the understatement of the year, we've been quite blessed.
Please continue to pray for us, that we can stay sane, get some rest, stay positive, and not feel guilty about being away from Dante.
Please continue to pray for Xavian, that he can endure all the discomfort or pain he's in, have courage, have strength, and be healed by the toxic chemotherapy medication that seeks ultimately to do more good than harm.
4 months ago