Nov 11, 2011

Stable... not the horses kind

Let's start with some stats:

Friday night 11pm- blood sugar 154! (very good)
Saturday morning 5am - blood sugar 136!  (Very, very good)

For those who are wondering, here's his height and weight: 

27.7 pounds, 12.595k
88 cm 34.8 inches

As he went to bed last night, I couldn't tell how he was because ofthe effects of the versed.  (That drug makes him look just like he blood sugar issue did.)  As the night continued, I could tell the versed was wearing off and he was grumpy!  He cried ... from 1:40-2:45 he pitched a huge fit ... I'm sure it was a blood sugar or versed issue.  He did it again at 4am for 30 minutes. 

When it was time to wake up this morning, he was (basically) himself!  I'll have to get the official results of the labs to call him officially Stable, but *I* (the non-medical doctor that I am) says he is.

9:45 took us down for a bowel, stomach xray (he was very tender in that area yesterday).

10:00 Surgery consult from one of the Docs (yesterday it was a PA) and he suggested a pyleloroplasty.  It took great restraint to listen to what he had to say as this is NOT NOT the right answer.  This is the opposite of a good idea, in fact.  But I have to realize that he is not as familiar with Manny's case as I am so he might need a little time to catch up.  (Not meaning that in a snotty way... well, maybe just a tad.)  But there is noooo way I'd sign for that surgical procedure. 

For those not familiar.  They would open up his abdomen, "clean out" (as he put it) the lesions in the stomach and first part of the bowel and make a larger hole in the bottom of the stomach.  The purpose of this procedure is when you have gastroparesis (delayed emptyping of the stomach).  And yes, he DOES have that.  So what's the problem?

If you're a regular follower of Manny, you probably already know the answer.  Food backs up from the bowel and back into the stomach.  So if you feed through the stomach, (no matter how large the hole), won't it eventually end up back in the bowel??!!??  How the heck is this a good idea? 

Thankfully, this is not his main surgeon, just the on call doc.  And thankfully I only need a broviac at this point in time.  IF the whole team ever decided this was a good idea and they could convince me (doubt it) I MIGHT consider it.  (doubtful again). 

BUT ... there was something good that came out of this conversation ... Manny is on the schedule for a Monday Broviac. 

10:30 The Endocrinologist came in and we talked for a long time.  He didn't know of anything off the top of his head that would cause his symptoms.  So it's going to be something obscure. 

I have no clue the ODDS of having TWO strange, rare disorders but it seems that's what's going on.  This doc was also not shocked at all about him crashing so quickly with TPN withdrawls.  We need to expect he will in fact from now on.  Also, he discussed the dextrose issue.  Most people are on about 45-50% and he is on 70%.  Not sure why it's so high. 

This doc has ordered quite a few very specialized tests and we won't get results for about 2 weeks probably.  He'll also send the results to the Geneticist since she specializes in Metabolic disorders.  (Why wasn't she already tracking this down?  Because when he got the diagnosis, everyone stopped looking for anything else.) 

11:15 Cartaya reports that his lab are all perfect again!  I already knew blood sugar but sodium and bicarbs are also right on.  Oh, and the WBC was 31,00 is now 9,000 (perfect).  So I was right ... he does NOT have an infection brewing.  He is NOT sick.  His body went wacko from the stress.  Which makes me realize, I MUST have a back up plan for if/when his TPN line is unusable for whatever reason.  He cannot wait even one night. 

The other lesson is that people need to believe me.  Seriously. Yesterday, the ER doc was scaring me suggesting all sorts of bad things (due to the extreme lethargy and the WBC of 31,000 and not responding to sugar).  He suggested it was sepsis.  (Always a high possibility with the PICC line and with TPN.)  But I knew he wasn't acting sick, no signs of infection, NO symptoms until the TPN died.)  He was also getting ready to do a spinal tap.  WTH??  I was not on board with that either as I knew it was sugar related. But I had no proof at that time. 

I have that proof now.  His WBC is back in range.  PROOF it's not sepsis, and proof he didn't need a spinal tap.  (phew)

I mentioned the surgeon's idea about the pyeloroplasty and he was just as baffled by that suggestion as I was.  (again, phew)

12:30 his blood sugar is 115 (PERFECTION and his norm).  So he is officially stable.  (Not just by Mama terms, but by the doc's tests.) 

Rest of the day ... uneventful. 

6:30pm, Dan and the kids arrive with Tacos.  Hung out.  Kaley decided to stay with me (even though she doesn't have a change of clothes).  Manny is still very, very grumpy periodically.  I know he's just hungry waiting for his TPN to arrive.  He cried hard when they all left. 

They weighed him again tonight and he is now 12.4 Kg which is about 27.3 pounds so he's down a tiny bit from yesterday. And about a pound down from last week.  His sugar was 109.  (I was told anything from about 80 to 130 for him is target, but close to 100 is best.) 

About 9pm he snapped out of it.  A few minutes later, the TPN arrived and we're very hopeful that this will bring back "Happy Manny". 

10pm, he asked to go to bed.  He says, "Blanket and kiss" ... his way of asking to be tucked in! (Sweet, huh?) 

And because Kaley is here tonight, I was able to take a shower!  And get some hot tea. If you haven't read the blog about her, please do ... it will melt your heart. 

Good night from a tired but blessed Mama. 

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