Trying to Get Better

Mom, can't you see
I'm trying to sleep?

Aaron's had a rough week, but he's hanging in there.  He's still sick, but we've been able to support him here at home.  Fortunately, he hasn't had to go anywhere this week, and I don't think we're going anywhere next week, either.  His oxygen requirments are still high, but not nearly has high as they have been.  So there's definitely some improvement. 

It's been another learning curve for me this week.  He gets eight different medications per day, with a total number of administrations of 17.  And he also has albuterol as needed.  The challenge is to determine if it's needed.  If he's having trouble keeping his airway open, the abulterol makes it worse.  But, if they're swollen and reactive, it makes it better, almost instantly.  So that's where the new lesson comes in.  Does he need it or not?  And with most kids, you can just listen for wheezes and tight sounds to tell if they need help.  Aaron can sound like that if he needs suction, or if he's got a larger leak around his trach, or if he needs a breathing treatment.  But we're learning. 

He had a occupational therapy visit this week.  We've missed our last several because he was in the hospital.  We're trying to strengthen his trunk muscles, so we practice sitting, and standing while holding his legs between ours.  He also uses some braces on his arms and gets in a crawling position, then tries to lift his head.  Let me tell you, this kid is one hard worker!  He doesn't quit.  He just keeps trying.  I usually stop his therapy when his heartrate is over 160 for a prolonged time.  But he doesn't stop.  He's my inspiration when I think things are getting too tough.

Today, he stayed home with a nurse while we went to the Hopekids movie.  Hopekids is a wonderful group that helps families whose child has a life-threatening diagnosis.  They help us feel normal, and give hope, a priceless commodity in this world of the medically fragile.  Because the weather has turned, and he's still fighting his pneumonia, I really didn't want to take him out.  She's coming again tomorrow morning so both William and I can go to the Primary program at church.  Yeah, he's grounded again. It's just too bad that it's not what he does that gets him grounded.  It's all the germs that he gets exposed to.  Talk about being punished for something someone else does.


Through all of it, he continues to play and smile, between naps.  In the video, I was just telling him he needed to behave and he had been shaking that little finger back and forth, "no, no, no."  Of course, he quit when we went to get the camera.  But he still had fun playing with Deborah.  I just love his smile.

Thankful thoughts:
Wednesday, November 9th:  I am grateful for my husband. I came home frustrated and tired and ready to lash out at the world. He put his arms around me and just let me rant.

 Thursday, November 10th:  I'm grateful for my oldest. I have so much fun just talking with her. I'm grateful to include my daughters as some of my best friends. They have grown up to be wonderful women.

Friday, November 11th:  Like many, I'm thankful for all who serve and have served in the military, especially my favorite veteran, my dad. It's also his birthday. He and mom taught me and my siblings to love and respect our country and all that it offers us.  I'm also thankful for my sister, Liz, who share's Dad's birthday.  She's always there for long talks about whatever.  Just wish she lived closer!

Saturday, November 12th:  Okay, this sounds silly, but then, I'm not a cold-weather girl.  I'm thankful for seat warmers in the car.  Actually makes dropping off and picking up kids bearable.  Also thankful for Hopekids.  It's so nice to just be able to go out and have some "normal" fun at a movie theater.  We got to take all the kids except Aaron, and Mary who was at college.

So onward and upward!  I'm hoping to have time for another post tomorrow.  I've found it's hard to do one during the week when I'm also working.  Thanks so much to everyone who keeps Aaron in their prayers.  It means the world to us.