GI doctor's update

Hey guys. We saw our GI doctor. Quinn is LONG LONG LONG overdue for a g-tube change. Her extensions are slipping and everytime we remove the extensions, because her belly is so distended usually, we get squirted with her nasty stomach contents. Meds leak out when I push them through.. yeah it's definitely time. But this time, the doctor is going to give her a g/j Tube. The J-tube is a tube that bypasses the stomach and goes directly into her intestines. this will be the way we tube feed her from now on. Since her stomach empties at such a slow rate, and she LOVES to eat by mouth, the formula with some solids throughout the day still causes her some serious distension. So we are going to try this out and hope it works. The only bad thing about this is that she has sleep apnea and is on oxygen, therefore, she has to be put out for this, meaning general anesthesia. This could go bad, but she did great last year for her MRI, so hopefully, we get the same results this time. She is bigger now and her breathing mechanism is more developed so it should be fine.

We also discussed the results of our latest labs... the one that completely ruled out MNGIE. Which lands us back to square one... obviously there is something going on with her, but what, we just don't know. Will we ever find the answer? Yes and Possibly are becoming a small pin light in this dank cave of  the undiagnosed. Quinn is happy. I know it seems strange, but for the most part, she is pretty healthy. We are able to sustain her growth and keep infections at bay easily right now. Her seizure medications have been working and the oxygen is keeping her very stable. She is does not seem to be in constant pain or agony and she adapts very well! So, we aren't really going to pursue anything right now. I don't really want to. I know i should go and see this Dr. Boles guy in CHLA, but I'm tired and exhausted. I get so down in the dumps and discouraged when we see a new specialist and they try to find out what's wrong, only to find everything normal. And on top of that, i just want her to be a kid. i'm tired of her being a pin cushion and if I have the choice (which I do right now), I'd rather spare her from the pain and suffering. So, we are treating the symptoms and continuing on.

The GI doctor said the fact that she has a high lactic acid level leads him to believe that that Quinn is suffering from some kind of mitochondrial dysfunction. She also has classic symptoms. However, there isn't much we can do since all her bloodwork for the mutations have all been normal.

As for me, yes, frustrating knowing that my daughter doesn't seem to be getting better and we won't know if she will or will not.. but i'm happy because my baby is happy. And she is thriving and alive and has the mind of the average 4.5 year old (which by the way seems like a mix of both our future teen years AND our past terrible two's) YIKES! she's so stinkin cute though!

Thank you for reading!