Day 12: Macy's Journey with the Rex Shunt

I've been trying to think about my post tonight, and what I might say.  I was going to say it was a pretty uneventful day.  At rounds this morning they told us that we were going to be moving out of the ICU, and that they would let us know when they had a bed for us.  Macy went for a walk this morning down to the end of the hallway.  She got very winded about halfway back, and felt like she couldn't breathe.  We had to carry her quickly back to the room and put her back on oxygen for a little bit.  It wore her out so bad that she then napped for almost 2 hours.  When she woke up from her nap, and she vomited.  It seemed like a lot of mucus, so it might have upset her stomach,  Around lunch time the nurse told us that we should probably pack up our things in case they called soon with a room.  Macy was in quite a bit of pain throughout the afternoon, and didn't want to do much.  So I just let her be a little bit of a moody teenager, and watch Teen Nick.  By early evening, we were still waiting to be moved.

So again, I was going to say that we had an uneventful day, and then this happened.....

Macy's dinner arrived in the room.  She had ordered gluten free pasta with alfredo sauce, cottage cheese, ice cream, and apple juice.  She took one bite of the pasta and said it was so gross.  I knew there was no talking her into eating it, so I ordered her some tomato soup.  While we waited on the tomato soup, she started eating some of the cottage cheese, and then moved on to the ice cream.  I looked over at her, and she had both hands up near her shoulders and she was scratching her shoulders extremely hard.  I asked her what she was doing, and she said they itch so bad.  I casually walked over there, and OMG.......she had huge welts of gives and redness all over her shoulders, chest, neck, etc.  It looked horrible.  I called the nurse in and she paged the doctors.  Of course being the teacher I am, and knowing about kids having reactions to foods and needing epi pens, I was pretty worried.  We had 2 doctors come to check her out.  At this point she was crying and scared.  They were asking all kinds of questions about what she ate, had she ever had a reaction before, is she allergic to any foods, etc.  Nothing.  Never.  It spread down both arms and started also on her upper thighs.  They ordered IV benedryl, because she wasn't struggling to breath, talk, or having any other anaphylactic symptoms.  It seems to have worked for the most part.  Some areas of welts and redness lingered for a while, but it seems to have taken care of it.  The bad part is that we have absolutely no idea what caused it.  She doesn't normally react to gluten in that manner.  Typically if she eats something with gluten in it she vomits.  The only thing we can think at all is that they gave her Miralax before dinner to help her go the bathroom.  I am pretty sure it's rare to have a reaction to Miralax, but then again Macy is about as rare as they come.   So we are all watching her closely tonight to see make sure something does go on again.  So weird! 

Needless to say, we are still in the ICU.  Not because of the reaction, but because they still don't have  a room for us.  They said that if a room became available upstairs that we would only be required to move in the middle of the night if they needed the ICU room.  Which I totally understand.  I just don't want to have to walk her up in the middle night, and drag all of our belongings through the hospital.  We'll see what happens. 

Macy stomach wound has seeped all day, and the new method with the ostomy bag is working great.  She took off a large amount of fluid today.  She is giving it a run at sleeping without the oxygen tonight.  So far her oxygen level is a little lower than I would like, but still in range.  So we'll keep an eye on her.  She is down to 1 IV in her arm, which is there for the TPN.

So those are things still keeping us here.....oxygen, incision seeping, and TPN.  I am praying it all falls into place soon!  We are exhausted and just want to get home.  Please pray for no more allergic reactions for Macy, and that the benedryl is all she will need for the one she had.  Please pray for Macy to eat better so that we can stop the TPN.  Please pray for the seeping to lesson as the body heals.  Please pray that Macy continues to breathe well without the oxygen, and that she doesn't need to return to it anymore.  Thanks for checking in on us!