Ugh! I have a feeling we have added another issue in the world of Quinn. We've been knowing for some time now that Q suffers from some hypoglycemia issues. This is a result of her stomach motility. It's terrible. When she gets hypoglycemic, she has all tell tale signs. She gets very pale, she starts gagging and wretching and trying to puke. She has an altered level of conciousness. Anyway, it typically coincides with her days when her stomach is being stupid. On these days too however (which is at least a couple times a week when things are going good), her stomach is slow and causes a lot of problems. She gets very distended and is not at all comfortable. Plus, due to the pressure, her feeds start leaking out of her J stoma and juices leak out of her G stoma. sometimes, food reverses back into her stomach. So, to combat the pain and since crap is leaking anyway, we drain her in attempt to relieve the pain and release some of the pressure.
Last night was no different. Yesterday, she started to have a bad tummy. I knew we were due. if she has 2 days of decent movement, we are bound to end up with the third or fourth day begging for mercy. It started with diarrhea accidents. She was playing in the yard and brown stuff was all over her legs... yep diarrhea so crappy! She took two baths and we had tons of changes. Plus, her stomach was bloated and uncomfortable. by the end of the night, she was wimpering in pain begging for medicine, a hot pack on her tummy and venting. This is typical.. not necessarily the diarrhea but everything else is very typical. When I say that Quinn's stomach is being dumb again.. this is what i'm talking about, usually. So I hooked her up to her drainage and turned off her feeds for about an hour and turned them back on. this helps her at least go to sleep! So, in the morning, her drainage bag is filled with all this bile and I check her blood sugars and they are very high. last time was 239, this morning it was 276.
Not exactly sure what's going on here, but I know it's not really a good thing. She's rollercoastering on her blood sugars and ti's been a pattern since November, when her blood sugar issues were noted. On the other hand, I didn't check her sugars regularly until recently, so I can almost garuntee that she had these issues before. I just wasn't aware. At the same time, her stomach motility has gotten worse anyway. so, doesn't matter about the past. right NOW she's having some issues and I think they need to be addressed. My auntie has a son who has juvenile diabetes and she told me that the way Quinn's blood sugars are right now sound EXACTLY like that. She mentioned when her blood sugar is so high to check her ketones. I think they ahve stuff to check those at walgreens over the counter? Anyway, diabetes is believed to be linked to mitochondrial dysfunction. since she has mito, it's nto very surprising that as we see progression of the disease, soemthing like this would crop up. But i'm not a doctor and can't diagnose her. I am keeping a record of her blood sugars. they do in fact coincide with bad motility. either low or high. We have an appointment to see her GI doc on the 17th. i plan on talking with him about this.
This disease sucks. We also had another mito warrior who lost is battle last night. His name is Cooper Knight. I'm not familiar with his story totally, but I know he had to have an intestinal transplant a little while ago. Though I don't know this family or much of the story, I am so sad for the family. keep them in your prayers. This disease takes too many lives.
No comments:
Post a Comment