We finally had our surgeon's appointment, the latest:

I arrived at the surgeons office today and went to check in and started to get super heated when the receptionist said that she didn't see Q on the schedule for today. I was like ..... about to start cussing ppl out. So I calmly told her who I spoke to last week about how the surgeon had an emergency surgery and so our appointment for last week was canceled and we were told to to come in today at 2pm. She had to walk in the back and check with some ppl and finally we got the ball rolling. Whew! I was about to be so mad because we just don't live that close to the children's hospital.

So, we had our appointment with surgeon today. This guy who does Quinn's surgeries is amazing! He does not want to do anything unnecessarily, and i really like his approach. but we know that Quinn needs help, otherwise she would not have been referred to surgery. He said that he just wants to see if there is something else going on that could be fixed so she doesn't have to have a j-tube. One of his biggest things is he wants her to be able to eat by mouth, regular food, food that every human being should be allowed to eat if they damn well please.  since the problem seems to be an emptying issue, he wants to do an Upper GI series to see if that is truly what it is. He thinks she might benefit from something called a pyloroplasty <--- pretty sure that's it. He said that there's a little thing in the opening of the intestines that opens and closes to let food in. Sometimes, this opening does too good a job and doesn't let the stomach empty at a feasible rate. The only thing is that this *might* not work the way it should and could result in dumping, which is where the food just goes into the intestines without digesting and just comes right back out. This results in pretty much the same pain and discomfort and we are trying to fix. But, he doesn't want to do that unless he knows that's what the case is. Otherwise, we discussed the separate J-tube procedure, which quite honestly, i do not like. He said that we cannot just go directly into the intestines because food can get stuck on the tube and it still clogs up the passageway and so he would have to cut the intestines, create a separate route for the tube itself  and then reconnect the part that he separated to a different part of the intestines. to me, this seems incredibly invasive and I can foresee there being some potential complications. At this moment in time, Q is only tolerating 35ml per hour, she is having seizures, which may or may not be connected to the digestion issues and she is having intermittent periods of pseudo-like episodes, plus, she is not gaining any weight. Obviously, any of these surgical options will not fix her stomach motility, but they do have the potential of making it worse (ie: an insult to the gut could just cause her stomach to go haywire and shut down) This is something we do not want to happen and so we have to make a decision on what is the right thing to do here. Quinn's stomach, I think is a lot of the causes for her issues, she bloats up, has difficulty in breathing, gags and retches... etc... so either A: we fix this problem, by possibly doing the pyloroplasty if that seems to be contributing or B: we surgically place the J-tube and hope for the best. I think A: is our best option here and I hope it is an option for her. One of my biggest fears about this is them doing the pyloroplasty and it not working and then having to go in there again, reverse everything and place the separate j-tube anyway. That would suck.

We also discussed Q's paraesophogeal hernia. she has one from her nissen fundoplication, however it hasn't caused her any problems that we know of. the doc said that this upper GI would allow us to determine if this needs fixing as well. We are hoping to get the upper gi done in the next two weeks as well as scheduling our follow up appointment for what the best plan of action would be. so, all in all, we will not know what needs to be done surgically until she completes the Upper GI series.

They also had a really fun time commenting on her anatomy. Quinn has a pectus on her chest, this is basically a defect in her ribcage. The middle of it caves in forming a nice little pocket in the middle of her chest. Hers isn't that significant, but it can be contributing to that chest pain when she gets all bloated like she does. or the chest pain could also be from possible reflux.. who knows, but it doesn't need fixing, thank goodness. Her ribs also fan outwards. It was just funny for them to all be like, "hey, look at that, she has a pectus." and the doc was all showing his student. Poor Quinn... a little science lesson. lol! She had fun with it though.

Since I last posted, Q has gotten much better : ) She is on her oxygen all the time still and she has her new seizure medication. Yesterday, she came up to me and she said she was really tired, so she layed down. i started doing my hair. about 20 minutes later, she came up to me and said that she was getting up now because she didn't feel all weird anymore. That was kinda strange for her to say so i tried to get her to elaborate on her "weird" feeling and she said she just feels weird sometimes. I asked her how and she said, "because sometimes I go like this and i go like that and then i fall down." She was referring to the way she was walking... how she moves to the left and the right and ti makes her fall. This was kinda heartbreaking. but also makes me realize that the way she is walking, she just cannot control it. but, today she seemed to be a little better with the walking and hopefully, her "weird" feelings will get better too. I think maybe she might be dizzy?Today was the first morning she woke up without another one of those "episodes (seizures)" and it was also the first day that she wasn't incredibly ataxic. And the first day she wasn't incredibly exhausted and sleepy.. the first day in about two weeks I would imagine. This is excellent, it means that her body is healing from the "hiccup" and I can stop worrying so much.   However, her stomach is being dumb again.. lol go figure... She hasn't pooped again... going on 3 days. so I started the Lactulose again last night... been giving it to her about 3-4 times a day, on top of lots of mirilax, still no poo. and she is all super duper hungry again... acting like I'm starving her. And bloating up a little bit. oi!

Welp, that's the latest.