Oct 3, 2011

Tired, frustrated Mama

The night was (relatively) quiet.  Manny had napped during the day so he was fine.  And then at bedtime, he fell right to sleep ... but then the interruptions started.  Respiratory came in.  Back to sleep.  Nurse came in.  Back to sleep.  Tech came in ... wasn't ready to go back to sleep. (But *I* was!)  So by the time he WAS ready again ... I was about to pass out.  I'd had basically no sleep the night before.  Kaley was still awake next to me on her air mattress, watching a movie. 

The nurse and tech were pretty stealth.  Baby didn't wake up much for pain or repositioning. 

At Radiology, waiting the test, wearing the new Tiger shirt

6:30, the WHOLE Surgery team came in.  I could hear them in the hallway discussing the case before they came in.  But darnit, only some peoples' voices carry enough to be understood.  I think they were just helping the new people catch up.  I saw several faces we've been talking with for days now and some new ones as well. 

We will be going to do an Upper GI fluoroscopy this morning.  He's had one done before back in February.  It will be interesting to see how/if anything has changed.  Which makes me think, I wonder if they would like the original study for comparison.  I'll ask. 

And in the meantime, we wait.  He's starting to get a tiny bit grumpy late yesterday.  Next will come weak unless they can figure this out quickly or switch him to TPN or something more than "water". 

Every person who comes in is asking how he's doing.  Truthfully?  FINE! I tell everyone that they have found the miracle cure for his situation ... to just stop feeding him.  (I know, I know ... I have a twisted sense of humor for sure!)  And the scary part is ... that IS an option for real.  I don't think we're there yet.
Manny with a child life volunteer and his new balloon. 

10am we head to the GI study.  NORMAL. 

What?  (sigh)

Don't get me wrong, normal is great.  But all it means is that we still haven't found the problem.  Apparently there were 2 different interpretations of the test results from the other day.  One group of people said it was the J in the G and loose Nissen.  Another group said all was normal.  (I wasn't told that.) 

This test shows all is going like it should.  (aaauuuugggghhhh)

Now what? 

They are going to start feeding him as per home.  Last time we resumed feeds, it took 24-48 hours before it backed up into his stomach.  Hope this time it doesn't take as long!  They need to see this.   So I'm actually HOPING for him to have troubles, to retch to have feeds in the wrong place.  Ugh.  

4pm ... half feeds started for 2 hours.  Then increase to typical feeds of 50 per hour. 
4:15... the surgery team came to tell me the results of the earlier tests (I already knew of course).  Their plan of action is to start feeds and observe him.  Really?  The Pediatrician already decided that and we've already started them.  I asked questions about dysmotility considering his neurological involvement and non-ambulatory state. 

The lead doc suggested instead that we would do things like higher calorie formula and less volume.  (By the way, that won't be a solution ... know why?  Because he's at the minimum number of CC's per day for his minimum level of hydration... but I didn't point that out yet.  I will if that's what they actually do. I happen to know that off the top of my head that he needs 45.3 ccs per hour to have full maintenance fluids. So reducing the volume of calories will make me just have to substitute water for hydration.  So how does that help?)  And he said we would just play with the amount and timing of the formula.  (Trust me, that is NOT what is going on!)  He used the cooking analogy that it might take time to get the recipe just right. 

When I again brought up the idea of  "what happens if that doesn't work?" He also said that he will discuss with his colleague (who is like the inventor of the gastric stimulator) and see his thoughts. You have to understand ... I LOVE conservative.  But you also need to know ... we've BTDT.  We've TRIED all the combos of timing and volume and amounts ... that is not what is going on.  I have been doing the conservative approach for far too long to do this route again.  It's pointless. 

And so we wait... we wait for his colon to fill up beyond the point of where he can't handle it.  OR they discharge me before it shows up. 

Now it's bedtime and he's starting to cough just a bit (that's been gone since he's been off feeds).  His mouth is again filled with extra saliva (that was gone too).  Still no sign of formula in the tube but ... it's just a matter of time; something I don't have much of before they send me on my way with that knowing pat on the head. 

I've been frustrated all day.  Researching.  Finding issues that I think really "fit".  There's the one with the dysmotility issue that is overlooked often but quite common in kids with neurological impairment.  How about we bark up THAT tree? 

Tired, frustrated Mama signing off.  Hoping to dream of a solution. 

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