Mar 28, 2012


Life is ... well, always interesting around our house.  Most days I feel like a juggler trying to keep all the proverbial balls in the air.  Trouble is, I dont' know how to juggle!  And I certainly have more than THREE balls.  :)

The good news is ... Manny has been out of the hospital for a month (We got out Feb 27).  This is the longest stretch out of the hospital since August!  We don't take this reprieve lightly. 

Now there have been a few "hiccups" during this time of course.  It wouldn't be Manny if there weren't a few of those, now would it? 

Many, many issues with tape, adhesives and the cleaning solution to try to keep his broviac infection free.  There was also an "issue" with the ethanol lock ... but that story is still unfolding so stays tuned. (Let's suffice to say it was an overdose that almost was given to him.)  But I'm proud to say I think we finally have a solution for his skin.  At least for now. 

Basically - these days they have found that a solution called CHG is the best, most effective antiseptic for line infections.  Much superior to alcohol or betadine (iodine).  We clean with this to change his dressing AND the little circle (disk) that goes directly on his skin.  However, he's developed an allergic to this cleaner.  So ... we had to change everything.  (Not easy).  We're now using betadine and a silver disk.  Had it for a week and a half and so far,  YAY!  It's working.  His skin is looking awesome!

Next issue:  Ever since his gallbladder removal, we've had ... uh, er... how to say it delicately?  Lots of "blowout diapers".  Maybe 4 a day.  It's truly problematic.  Not sure why the change but let's say I've really increased my laundry recently!

Another issue:  Hypoglycemia.  Every day he is on his TPN for 18 hours and off for 6. This used to be a fine system.  Lately, his blood sugar is dropping.  It's dropping low enough for him to basically pass out every night.  And it's happening earlier and earlier.  His level last week was 41.  They upped the dextrose in his TPN and it didn't help really. 

We've been working on getting a glucometer so I can test at home BEFORE he passes out.  And a solution on what to do  to prevent this.  I should have the machine and testing strips by tomorrow.  And the protocol as well. 

Next issue:  Some of you might have remembered that Manny has had a "stye" on his left eye since September.  They come and go but never completely go away.  Well, this last week, it was the biggest it has ever been.  He could barely close his eye.  I put the warm compresses on it to get it to come to a "head" and it does but wow!  For the first time, he has another one on the bottom lid, same eye.  (Right where the top one is so they meet.)  They are both about the size of a pea to slightly bigger.  Waiting for his eye doctor appointment.  I started researching and found there is something called a "Recurrent Chalazion".  Must be what he has.  This picture is from when it was looking MUCH better. 

And the final issue:  Tuesday he got a 102 fever for about 3 hours then completely gone.  Wednesday, he's been teetering around 100.6 all day.  I talked to the Doc and we agreed on a plan.  If he stays with a fever by tomorrow morning, I will have to take him to the ER.  OR if his fever goes up, I will have to go in as soon as that happens.  (Praying.) 

Now lest you think that is all that's going on ... Luke (8) and Sam (10) were playing with the waterhose in the backyard (so they were barefoot) and Sam accidentally ran over Luke's toe (top of foot) with one of those ride in cars.  Long story short, thought he might have broken his toe or the bone on the top of the foot.  Took him to the ER but no break (thankfully) but he does have a "crush injury".  They said to be concerned if that part of his foot feels "numb" and it wasn't ... but tonight, it might be beginning to feel that way.  (We'll see in the morning.)  In the meantime, he's loving his crutches!

1 comment:

  1. Goodness Gracious. Goodness Gracious. Sending prayers and strength and love - <3