We Are Home!

Ok, so basically, Quinn had her j-tube replaced today and she did great. She had a little bit of a rougher time coming out of anesthesia and had a few apneas, but she just needed oxygen till she fully woke up and she was fine for the rest of the time. They started feeding her a few hours after the procedure to see if she would tolerate. She did ok. slight bloat, but she was good and playing around and it was obvious, she didn't need to be there. I THOUGHT it was too soon to send her home if they were looking at seeing how she tolerates. IMO, 3 hours is just not enough time to see if she is tolerating a feeding at 50ML an hour. She did ok, but I swear to God, and i didn't feed her a darn thing! They discharged us, we started driving the 1.5 hours home, she fell asleep in the car and woke up and she was super distended again! WTF!?!  we JUST get discharged and she decides to bloat up AFTER? not during? I promise, I fed her nothing from the time she got discharged to the time she got distended. The only difference is that she is not in pain from this, so i suppose it's a good thing, but doesn't that just piss you off? pisses me off. Anyway, I'm just dealing with it the way we always do and will continue to unless this becomes another emergency. Until then iv'e got a little work to do...

Ok, basically, Quinn's jejunum/duodenum goes from the side of her stomach and goes upward, kinda like a hook and then heads downward. This obviously makes for an interesting placement of the Jtube. It was already dislodged after just 4 days of it being in. Could this be a vicious cycle? It's very likely. The docs said they would probably replace it a couple times before they think of other options for feeding her. So my question was could this anatomy of her stomach be contributing to her severe DGE? The answer was, yes, it more than likely plays a role in this.




Basically, a normal child's stomach will empty when it is about 1/2 way full. Quinn's emties when food hits the top of her stomach, so old food can be sitting there for a while, not to mention that it just simply takes a LONG time to get there. THEN. it has to go UPWARD instead of DOWNWARD so gravity in this situation is NOT her friend. This explains why I was seeing some formula leak back into her stomach. So... why are we not discussing fixing this? that was my main question. And the answer was that I would have a very difficult time finding a surgeon willing to fix this problem. She said that the operation in itself is complicated and has its own set of risks and that it's not exactly a garunteed fix. She feels that Quinn already has slow motility anyway and so this operation has a high liklihood of not benefiting her. As with any operation, i'm sure there are risks, but i disagree. I asked her what kind of complications can come with this? Quinn already has a g/jtube, that is obviously complicated in itself as far as placement goes. Not only that, but she is not without problems with her gut, as we have known for a while now. Her stomach gets so distended that it has caused her ribs to fan upward, permanently, this squishes her lungs which makes her require oxygen. The hypoxemia in itself is suspected to cause her seizures. Who's to say that if we can fix this, all her problems will disappear? Well, I think there are enough problems that are possibly associated with her stomach distension to at least give it a try. What's the worst that will happen? aside from a complication in the OR... I would think that if she makes it through surgery, the only thing that could be bad is if the surgeyr just didnt' work and we are stuck back to where we are now... a slow degeneration of her stomach... back on the g/jtube, back to oxygen. BUT if the suregery DOES work, she could get rid of her gtube and her jtube and her oxygen and even possibly her seizure meds!



I know that Quinn has a lot of problems that point to a mitochondrial disorder. she is highly suspected of having this disease, however, she has had so much bloodwork for mitochondrial DNA and other diseases that resemble mito and all of her bloodwork has come back clean. We have NO answer for why she has seizures, NO answer for why her stomach seems to be degenerating and just NO answers for why she is the way she is. So this leads me to believe that if she has a problem in her stomach, such as this one that could potentially be fixed, we MAY be able to make her better.



So, after discussing this a little further with the doc, she said that it might be a good idea to get a surgeon consult. Which we are planning to do this. We are to see her normal GI doc in a couple weeks then we can discuss this surgeon consult with him. My ENTIRE family wants to fix her and if there is a possibility to do this, we are going to find out!



So now i'm curious, dear friends. what is your opinion on this?
 
Anyway, it's good to be home. Quinn is happy and i'm ready to get some sleep.