My Quiet Time

It's my quiet time right now. I've been cleaning the house like crazy preparing for this trip to Washington for my brother's wedding. We will be gone for a week and I want my house to be very clean when i get back so i can just come home and put the stuff I traveled with away and not have to worry about anything extra. So I been scrubbing bathtubs, walls, doors, dusting, mopping. so now, it's rest time right now. Q got tired and decided to take a little nap : ) The puppy and big dog are asleep now too. this is actually relaxing.

One thing that seems to take up most of my consiousness <--- how do you spell that stupid word? .... is This J-tube surgery. I often wonder what would happen if we go back to continuous g-tube feeds. This would likely mean that Q wouldn't be able to eat anything at all by mouth. She would have to go back to oxygen full time again and she would be on the feeding pump 24 hours a day. The stomach would likely be constantly bloated like it was before and etc...  Just like I picked up very quickly when her j-tube was not in its proper place... I knew quickly because her stomach simply did not empty fast at all. Even on 35ml/hr, it was filling up her stomach to AT LEAST 60 ml before it even emptied. Probably more because i didn't even bother hooking her up to two syringes. (this is likely if her stomach motility has not progressed in the past 2 months, if it has, I can expect worse going back to g-tube) Part of me wonders if we can just deal with this for a while instead of insult her gut a little more. Maybe until it becomes a dire emergency for her to absolutely need a j-tube in order to survive. While i think about the possibility of doing this, I also think about the great improvement we have seen when her j-tube is actually in the right place. Quinn seems more alive, her color is wonderful. her stomach, normal in size. She has no tubes on her face. She concentrates more on schoolwork. She sings and laughs and is just so happy! So what this boils down to is that this j-tube is likely improving her quality of life. I'm afraid to ruin that in any way. either from having surgery or not and going back to g-tube feedings.

another thing that I think about a lot is school. School is coming quickly and I'd like for Quinn to be able to go in for at least 3 hours out of the day. School took a lot out of her last year. We had a year of perfection it seemed! A year with no hospitalizations... 2009 was a very good year! She started school full time at the end of 2009, off oxygen and feeding tube, and we were very happy with her progress, but by May 2010, Quinn had dropped down from 4 hours a day 5 days a week, to 1-2 days a week for 3 hours. She was placed on the feeding pump 24/7 and placed on oxygen 24/7. Her minor seizures that were well controlled, progressed to full blown grand mals (had one in school even) and she was hospitalized for pneumonia. This created a nice little downward spiral into the hole we are in right now. Would this have happened had she not been in school? Maybe... but there is really no way to know for sure, but I would like to keep her very active and healthy when she enters school this year. I'd like for her to stay out of the hospital and keep her butt in school so she can have fun, and learn with all the children. Keeping her tube as a g/j, will not accomplish this goal. Having surgery to put in a j-tube might, but at the same time, it might cause even more problems... and keeping her on the tube with just the g-tube, well, let's just say that even with all her supplements, this wouldn't sustain enough nutrition to keep ti going for long.

It is likely that our best option is to have this j-tube surgery. But, it scares me too. Which is why I cannot stop thinking about the pros and cons. I find enough pros to lean towards this option, but enough cons to stay away from it. The hardest thing is not knowing how her GI system will react to an insult to her small intestine. I will probably put in a vote with my family, whether or not to do this. I am very happy that they are all very involved in her care and keep themselves well informed.

Time to finish scrubbing.