Mega Steroids Day Two

Today was kind of rough.  Jenna started the steroids yesterday and had the second round today.  We went to the Rapid Treatment Unit, or RTU, at Primary's to get it done, since it is done by IV instead of oral.  Methylprednisolone, or Solumedrol, is a mean drug.  The run time for it is one to two hours, but we went over two hours to see how it tolerated it.  It turns out that she doesn't tolerate it well.  It gives her a horrible taste in her mouth and makes her feel nauseated.  About three-fourths through the first dose yesterday, she puked and felt so much better.  Her favorite thing, or really the only good thing, about the hospital is that they give her a room service menu and she can order at any time.  Denver Children's used to give us a $6 cafeteria coupon for an all day infusion.  Room service is way better for her, although the cafeteria in Denver is about a thousand time better than the main cafeteria at Primary's.  Any-who, she ordered a bunch of food that she didn't feel like eating until after she puked.  She magically got her appetite and down a whole bowl of popcorn.

She got her food ordered first thing today and went to town on it while we waited for the IV team to come and start the IV.  She prefers them because they have a cool lidocaine shot that isn't really a shot, more like a puff, and it numbs the site pretty well without having to poke her.  It took them two tries to get a good one started.  It didn't take long for the bad taste/nausea to settle in.  Unfortunately, she wasn't able to puke and make herself feel better.  She was miserable all the way home.  I made her take her miralax before bed and that was the winning ticket to puking.  Hopefully now she will be able to sleep. 

Dr. Bohnsack came in to see her today.  He told us that the MIBG from yesterday was kind of inconclusive.  I asked him to clarify what that meant because that is the scan that makes neuroblastoma light up.  If I actually understood what he said, he said that it looked hot around her adrenal gland, but that the radiologist was unsure if it was accurate because her stomach is distended and pushing things over to the right.  The way the iodine goes through the blood vessels, it may just be a collection of iodine in that area.  I think.  So they are trying to decide if the next best thing is to do a CT or an MRI to figure it out.  He has a call into the oncology department to see what they want to do.  He is also going to be going on vacation next week, so hopefully we will at least get the next step figured out before he leaves. 

25.2 kg was her weight today.  That's 55.44 pounds.