May 5, 2011

Thankful it's just the pump

Wednesday Manny went to get more serial casts on his feet.  Remember back in December he did that for 6 weeks?  Well, due to all the visits to the hospital and the IVs in his feet, his feet have turned back and we had to recast. 

He HATES it being put on!  But last time, he would stop crying, never mention it again.  He didn't seem bothered by them.  He was just heavier to carry. 

But this time, even as I left the hospital, he was crying and grimmacing and saying, "Owie" when I would lift him, carry him or move his legs/feet.  That's new.  I wondered if it was just due to him objecting or if it really hurt. 

All through the day Wednesday he was fine unless I would have to move him or his legs or feet. 

Meanwhile, also starting Wednesday, his feeding pump showed a feeding error.  The machine was acting "normal" but I knew it could be the problem.  OR the problem could be with the tube in his tummy.  But that was flushing fine and acting right too.  So ... not sure what it was. 

About 9pm, the pump refused to work at all.  I changed the bag, his extender tube, flushed him, etc etc.  I tried everything and nothing was working.  For 3 hours I tried.  Nothing. 

I put the prayer request out on Facebook and I tried one more time and it worked. That fed him for 2 hours before it acted up again.  So at 2am, I had to turn the pump off and wait for morning. 

During this same time, he was waking up often ... SCREAMING.  And we didn't know if there was a pain in his tummy or his legs.  Tylenol didn't help. 

Before the crack of dawn, we just decided to call it a night and turn on the TV for him, hoping that he would stop crying.  (We've noticed he's less likely to cry when he's awake.)  And I got ready for work.  I agreed to teach a seminar all day Thursday and Friday.   I knew I wasn't going to be on my best game! 

Dan was at home with him.  And called the DME company.  They delivered a new pump ASAP and it's worked just fine all day.  No troubles.  Thank You Lord!  That means it was the pump (the easy fix) and not his stomach (which would require a hospital stay and surgery!!).  So needless to say, we're very relieved tonight.

Also, through the day today, he still continued to cry every time his legs would get moved.  So when I got home tonight, I called the Serial Casting lady and left her the message.  She's gone for the day but I am sure she will call first thing in the morning and let us know what to do. 

We're just praying for a decent night sleep!! 

So thanks to everyone for your prayers for Manny.  We can truly feel the difference it makes. 

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