Tuesday, November 27, 2012

Random Thoughts and GI stuff

Random thoughts.

A few nights ago, we were getting ready to sit down for dinner when I heard Murphy tell Cooper that Harlie called him weird.  Harlie was in the other room at the time.  Cooper looked pretty annoyed at this information and left the table to go have a word with Harlie.  When he left I said, "Murphy, what are you talking about, Harlie can't even say the word weird."  And Murphy replied, while laughing, "I know.  That's what makes it so funny."

We couldn't help but laugh with him.  Sometimes I think the hard stuff in life gives you a really twisted sense of humor.  

Here's a picture of Harlie doing one of her favorite things.  Feeding Rooney.  That dog dances and spins around when he knows he's about to eat.  


Poor Harlie has had a rough few days.  Without going into too much uncomfortable detail, her GI system is somewhat "delicate." One of her birth defects required anoplasty at one year old.  And because her stuff was a little out of place, we have to be very careful to not let her get constipated. Should be easy on a formula-only diet, right?  Wrong.  

We've actually done okay thus far.  She's certainly had some moments that were unpleasant (for all of us), but for the most part, she's good.  But lately, I don't know what is wrong.  I mentioned the problem to her pediatrician at her well check appointment back in September.  So, I know we must have been having some issues if I even brought it up.  She has been on a daily dose of Miralax for years.  He suggested switching over to prune juice since it is more natural.  And because I tube it, we don't have to worry about her willingness to drink it.  

It took a few days to get the right amount figured out.  But then it was fine.  I also switched her over to the formula with fiber.  Same formula, just with fiber added.  

She gets four cans per day, plus 22 to 25 ounces of water.  But despite this consistency, she is still having issues.  She'll be fine one day, and crying in pain the next.  I don't get it.  

I do think that since she has some overall low-tone issues in her body, that her GI system is likely to be low-tone, too.  But, she's on an all liquid diet - with the same amount of fluids and Miralax (or prune juice) daily.  What is going on?  

Last Monday it was so bad that she couldn't go to school.  She missed the bus because as soon as I got her up to get ready, she sat on the potty, and wouldn't get off.  I had to send the bus driver on, without her.  She was in and out of the bathroom all day, with no results.  I think it was the next day or the day after that when she was fine again.  

Then, Monday (yesterday), she spent over two hours in the bathroom at school.  The whole class went to lunch and recess while she was stuck in the potty.  I had to pick her up early that day.  And I know for a fact that she went just fine on Saturday night.  She got her juice every day and by Monday she was crying while trying to go?  Makes no sense.  

I called her pediatrician and said that her missing two days of school for this is not normal.  He agreed.  He said to switch her back to Miralax to see if that helps.  She got a full cap yesterday and today and she was crying on the potty tonight with no real success.  Ugh!  

I am going to start writing it all down so I'll have some better info if we end up having to see her GI doc.  

So, changing subjects... every month a respiratory therapist has to come out to the house to see Harlie, check her sats and heart rate and check her equipment.  Most of the time it is someone who has already been out to the house, so they already know where everything is so I don't follow them upstairs to her room anymore.  

Well, last night (Monday) I noticed that Harlie's stationary suction machine in her room was backwards on her dresser.  I thought that was a little odd.  I know she has to check it and all, but shouldn't you put it back the way you found it?  Especially considering the way she left it, there was no way to turn it on from that angle.  I must say that I was a little annoyed.  

Then I went to use the machine and I swear that it's not working as well as it did before her visit yesterday!  It seems to have less suction power.  Tom fiddled with it tonight and couldn't get the suction power up.  So, I'm going to have to call tomorrow to find out what she did to it.  Now I'm really annoyed.  I know some RTs get hung up on the pressure number, but I know my kid and I know what she can handle.  So, don't go messing with my stuff.  

Of course I'm assuming that she messed up adjusted it.  If she didn't and this is all my imagination, then I apologize to her.  But I really think it's way weaker than it was yesterday before she came over.  For the record.  

Okay, must go now, totally falling asleep while writing... I apologize now for any and all typos.  I am so tired I am not going to proof it.  

Thanks!
Christy


1 comment:

Susan said...

Hey Christy, I know we already talked about this but Ainsley has low tone and she's very....ehem...regular (as in same time every day usually). Has the dietitian reviewed her fluid levels recently? Or maybe it's time to come off the 1.5 cal and go to regular since it's less concentrated? I hope the docs can figure it out so Harlie feels better and it doesn't become a bigger problem.

And FYI with the suction you might want to make sure the inner parts aren't broken. I assume it's a Devilbis? I'd had the nurses take the machines apart and crack the part inside that's on the lid. It's very hard to see but can cause the machine to lose suction. I hope you can get it working better.

Murphy is too funny. Poor Harlie though, I hope she didn't get into trouble with Cooper.

I hope you have a good week.