Saturday, February 1, 2014

It's happening.

It's really happening. Monday is the day. 


I'm not going to lie, I'm having a heart attack. Seriously, I've been having a constant mini heart attack since his physical therapist brought his wheelchair. 
(Technically, it's not his wheelchair it's one we are borrowing until his comes in. And it's pink.)

But, finally, everything is in place and Monday is the big day. The school keeps laughing and joking about how they'll understand if they see me lurking in the bushes or peeking in windows. They aren't understanding that I am actually going to be doing those things. I've said it over and over again. They think I'm kidding. They'll learn. 

A lot of things have been going on the past few weeks in preparation for school and just life in general in regards to Theodore. The first of which is that we switched equipment companies. I am thankful for all that his former company did for him and a few of the people there we will miss. But this new company has put on a great first impression. We not only have newer, nicer equipment but we are getting supplies that the other company could not give us. Simple, little things that make our life a lot easier. And big things too- like an oxygen home fill system that makes it possible for us to fill up oxygen tanks at home without needing to order new ones. They also took an extra set of supplies to the school for Theodore with no hassle at all whereas the other company was unable to do anything for us. And, one of my favorites, is a new humidifier that is quieter! Woot! Not silent, but much quieter and I am thankful. 

Also, PRAISE THE LORD, our nurse Christine is back. Hallelujer. We could not be happier. I tell her every year that she can't go on her 2 month trip because we always end up in a mess and every year she goes. I think this year is going to call for a lost passport.... but now she is back so I don't have to worry about a nurse literally refusing to enter the house because of the dog or a nurse disconnecting him from all of his equipment to put him IN THE BATHTUB. You laugh, but it happened. She seriously turned off his equipment and took his oxygen off so she could carry him to the bathroom and place him in the tub and bathe him. SO many things wrong with that. 

We have also met his new ENT doctor who I like much more than his former. He and his nurse seemed very surprised that we were not hearing Theodore at all when he cries or laughs. Apparently you should be able to hear some noise around the trach. This is leading them to believe that he has granulomas above his trach and it is blocking any air from getting through. This is not a surprise considering he has had this before and had it surgically removed. So the question now is, is it worth having him go under again to get it removed knowing that it's going to grow back just so we have a chance at hearing him for a short period of time when it's not necessary?? We have time to think about it, but it's one of those situations that just seems stinky. I'd love to hear my son, but is it worth the risk of surgery? Not sure. 

Theodore does, however, seem to be doing quite well. This winter has thankfully not fared too hard for him. He's made it through with no infections or respiratory issues. That is, until he starts school on Monday and is surrounded by all sorts of dirty little petrie dishes. Oh well. What can you do? 

For now, we are happy with the new equipment and thankful for almost to the day one year being hospital free.    

1 comment:

  1. Could not be more thrilled that you have the new equipment and wonderful new supplier! I can certainly understand your fear and concern about trt leaving home....without you! However it is God who has opened this door and He who will be holding Theodore s hand all day :-) I know you believe that also! Xoxoxoxo