Thursday, June 30, 2016

We Made it Home (a Couple Days Ago, Sorry)

Sorry for the delay in posting, but it's been a bit crazy around here.  No, nothing bad, just general, life goes on crazy.  You know, work (me and the kids), yard work, housework, soccer practice, play practice, etc.

But we did make it home from the hospital on Monday.  He continues to have spikes in his oxygen needs, but they're becoming more and more manageable.  I think it's just going to take time to get the old formula out of his body systems.

And speaking of eating, we're going to be trying to transition him over to a blended diet. You know, real food instead of formula.  Can you imagine having the same exact meal for every mean, for 4+ YEARS??  Yeah, sounds yucky to me, too.  I've been putting together information and we're working on getting equipment together.  To be able to create a blended diet, we need to get a high powered blender like a Blendtec or a Vitamix.  The others simply can't make it fluid enough to not clog his g-tube.

Field trip to dentistry
with my entourage.
And I've been gathering information and learning what I need to do to make sure he gets the nutrition he needs.  But it's also kinda funny.  No matter how well-balanced or unbalanced it will be, chances are it'll be much more nutritional than my other kids had at his age.  They kinda lived on mac and cheese, or bread, butter, cheese and raisins.  Yep, his will have more variety than that.  And they seemed to turn out okay, at least so far!

But I'm excited to try a new way to help him out.

Wearing his lead vest, and thinking,
"There's no way I'm putting that in
my mouth!"

Before we left on Monday, we went up to the dental clinic to get x-rays as a follow-up to his surgery in January.  It's kinda funny.  He was still inpatient because computers were having challenges, so we had to work with inpatient protocols.  That meant we had to have a respiratory therapist and a nurse, and the hospital vent, oxygen, suction, and pulse/ox machine. So it took three of us, two equipment poles, and his wheelchair.  When we left two hours later, it was me and him and his wheelchair, nothing more, and I drove home that way.  Yep, we figure out how to get things done.

And this kid, he HATES having anything put in his mouth, unless he does it and it's his idea.  It took a little bit to get good images because we had to put a probe in his mouth.  Nope, not too impressed, but he recovered well.

He won't be having his surgery that was scheduled for next week until the end of September.  And now, he's back in school, LOVING it, and doing soooo much better.  I just wish I'd figured out earlier that the formula was the issue.  At least we know now...

Knowledge is a sacred cow, and my problem will be how we can milk her while keeping clear of her horns.  
~Albert Szent-Györgyi

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