Oct 11, 2011

Another Theory Bites the Dust

Failed experiment after failed experiment. 

That's been the past few days.  They are testing out theories.. and one by one, Manny proves the theory wrong. 

Painting Lightning McQueen ... he is a very neat painter!

Today's failure was the most intense of all.  We tried him on a food based formula (compleat pediatric) and I had to shut off the machine and call for the nurse.  117 ccs had gone in and 100 had come out.  Then he started retching ... badly.  Once it even came up in this throat.  How do I know?  He said, "Yucky!"  He had a hard time catching his breath.  He was screaming OWIE and pulling up his legs (best he could). 

Apparently, the nurse called he Resident and he called the Head Doc.  Both showed up in the middle of this so they could SEE what was happening. 

A few minutes later, Manny collapsed and just basically passed out.  Even his blood pressure bottomed out.  (75 over 50).  As I type this, he's still sleeping it off.  He's back to pedialyte. 

The doc said he has no clue what else to try at this point ... but he'll come up with something.  He was very intense as he said this.  You can tell he is taking this as a personal challenge.  (I think that it helps that the morning and every other day, Manny has been a real flirt.  He's quite charming and engaging.  When he is on pedialyte, Manny is "hiself".  But ... to see him like this?  Your heart just breaks for him!  You MUST figure it out and get him back to his cute, charming self. 

The nurse came in and said that they are going to restart his IV fluids ... just for extra calories since he's losing weight.  His foot vein hasn't been used in a couple of days but they flush it periodically.  She flushed it and all looked great. 

About 30 minutes later, he was crying about pain again and this time ... it was his leg.  Sure enough... his leg was infiltrated.  That means instead of the fluids going IN the vein, they go around the vein and into the tissues.  That's not good.  It's quite painful.  His leg is swollen up to his knee and hard as a rock. 

That also means we needed a new IV.  One hour and 3 pokes later, they got one.  In his thumb.  You're getting desparate when you resort to thumb veins, trust me.  And I think they're now officially out of veins to try.  We might end up with a port or a PICC line by tomorrow anyway just for the veins. 

Today has been particularly hard, depressing and agonizing.  He's suffered a lot today.  And I wonder how much more I can/should put him through.  When do I call it and say enough is enough?  I'm getting there.  But with every new day is new hope that THIS will be the solution.  So we plod on.

1 comment:

  1. Beth, I have lurked for a long time. This child is so precious and I am glad they have all caught the Manny bug. Maybe they've checked everything but could he have a partial blockage somewhere? Earlier I thought it had to be an allergic thing but I wonder now. Maybe there is some enzyme missing. He has come so far. I hope they will still scan and biopsy, etc. before saying they can't help him anymore. Prayers again today for Manny and his whole family.

    Carolyn (in Las Vegas)