Wednesday, February 1, 2012

The Future?

Owen had a GI appointment yesterday. It was a meeting he had about a million times last year. 

Last week, after Owen's antibiotic was completed we changed his formula from neocate infant to neocate jr. We have been trying to get him on neocate jr for probably about a year now. Neocate Jr starts at 30calories/ounce. Owen came home from the NICU on neocate infant at 22calories/ounce. Up until last week, he was on 27calories/ounce. A lot of things go into why it has taken so long to increase his calorie intake. The main reason being that his bowel simply cannot absorb the calories when they are given in larger quantities. I wish I could go into it all, but really, you just need to know that every calorie/ounce is a huge step for Owen.
When we switched Owen to the neocate jr last week, his belly began to be more distended and gassy. He started to throw up daily, which is what he was doing about every couple months before we started TPN at home. He hasn't had a GI upset in a while, but the neocate jr was a huge step that, I guess, he wasn't quite ready for.
Before, when Owen would have a GI upset, he would be in the hospital getting poked countless times so that they could keep him hydrated as his gut had time to rest. Now, he has his broviac and is on TPN so he has not had to be hospitalized, Thank God! For now, he is on a pedialyte only diet until Thursday and then we will add a cup of formula a day.
Next monday, Owen will have an endoscopy so that they can get samples of the bacteria growing in his intestine. They are hoping to get the exact bacteria that continue to cause his gass and distention so that they can better tailor his medications.

This appointment really got me thinking.

Owen goes back and forth. We know that. I guess we were just hoping that something would be more "normal" by now. Our life is centered around when the next doctor visit is, when his next sickness will come, etc. We will live like this as long as Owen needs us to but at what point do we try to accomplish our goals while living day-to-day, hour-by-hour. With the new year and thinking about what we want to accomplish this year, I can't help but think of all the things Heath and I want to accomplish as a family, as a couple, for our future. Many of these things seem to be unreachable. We have been trying to figure out how to move forward in life while keeping everything Owen needs. Maybe there is nothing more we can do for now but we are thinking about it a lot lately. Maybe living day by day, hour by hour, will be the best thing we can do for Owen. I'm not sure. I just feel like we should be doing more.
There are two huge things that are always in the back of our minds but seem to be things we won't be able to accomplish, at least in the near future.

I would love for Heath to finish his education. How can that happen? We need to support a family. I could go back to work but we would have to hire and train a Nanny which might cost more than its worth. Plus, when Owen is in the hospital, do you think I will be at work? No way!

I would love to get our own place to live. This can't really happen until Heath has a better job, a career, something we can count on. We are so blessed by my mother who is letting us live with her rent free, while basically taking over her whole house, but it would be nice to have our own space and be able to use Grandma as a babysitter every once in a while.

These two things will continue to be in the back of our minds. Hopefully we will find a way to accomplish them but we have to keep Owen's health at the top of our list.

1 comment:

  1. I hope and pray that you guys will be able to accomplish all of those things, while being there for all of Owen's needs.. that you figure out how to juggle it all! I am in awe of everything you guys do. It's truly amazing.