Sunday, October 23, 2022

GI Issues and The Plague (Covid): What a Month

It's been an interesting month around here.

Yeah, "interesting" is probably a good word for it.

When last we left our hero, he hurt, he hurt a lot.  And the cycle continued.  We would have three to four pretty good days, an excellent day, and then hell would break loose again.  

He would start by grabbing at his belly, pulling at the g-tube.  Then writhing and grimacing.  Followed by crying, screaming, fevers and often a river of brown stuff from his bum.  We would have to stop his food, do pedialyte for 24 hours, and then start again.  

Consulting with his special needs ped, we put him on a very, very bland diet.  Think BRATT.  Tried that for a week and it went well!  So I reintroduced something.  I can't even remember what.  Nope, didn't work.  

So now he gets bone broth, white rice (brown caused issues), a bit of tofu, banana, white potato, and some oil, salt, and blackstrap molasses.  And it seems to not hurt.  But at the same time, he's still experiencing diarrhea and has been for about six weeks.  

The good news is he no longer storms.  He's not crying.  But I am worried about nutrition.  I discussed this with the Dr. M. and we've decided that for now, we're going to stay the course.  It's not optimal, but he's in a decent spot and he's got surgery to fix the hole between his artery and vein in his groin area this Friday.  No one wants that derailed...  Plus we have an appointment to see GI about this whole mess the beginning of November.  The thought is that it's better to not muddy the waters at this point.  So there's that.

And then the plague hit the house.  I brought it somehow from somewhere.  I know it manifests differently for different people.  I'm just not sure why I was the lucky one who was (and still kinda am) totally miserable.  I got to the point where even swallowing ice water was painful and tricky.  I've been cleared for over a week now but the exhaustion and sometimes dizziness is persisting.  I do okay, and then not so much.  Although I have progressed from where even showering was enough to put me back in bed.  

William on the other hand felt like it was a cold.  Michael is still wishing that the ankle he sprained a few days before getting sick would get better.  Yeah, they got off pretty light.  

The good news is that Aaron didn't get it.  My nurses stepped up big time, especially his one school nurse.  They filled in any gaps they could so we did almost nothing with Aaron while symptomatic.  So very grateful for their help!!

So that's our month in a nutshell.  I'm grateful most of the illness was over fall break when I didn't have much to do for school.  Having Michael out at the same time meant that we weren't getting up at 5:30.  But frankly, it was miserable, and I'm glad it's (mostly) over.  

Friday he is having surgery.  It should be fairly straightforward.  Should be.  They'll keep him at least overnight due to his pulmonary hypertension and anesthesia not playing nice together anymore.  Fingers crossed that we're home on Saturday, or Sunday at the latest.  And here's hoping that it does take a load off his heart like it's supposed to.  

But for now, good days are outnumbering the bad by about 10 to 1. Blessings...

 Every good gift and every perfect gift is from above, 
and cometh down from the Father of lights...
James 1:17

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