Saturday, September 15, 2012

SO, TO SUMMARIZE...

It's been a wild and crazy week. We get home from The Center for Courageous Kids camp last Sunday afternoon. Camp was a blast. Colby got do arts and crafts along with cooking class (his choices). He also got to swim for the first time since being trached. He also went horseback riding again. It was a busy, busy weekend. I think the best part of camp is seeing all the other SMA kiddos and families. How nice is it to go somewhere where you're the norm, not the different one? Hmmm, it was amazing to see how much better Colby drove his wheelchair when he was around other kiddos driving their chairs. Colby had 2 oxygen drops on Sunday while at camp. I figured it was either mucous plugging because he wasn't on his vent humidifier or because he was just tired. Well, here's where it starts to get interesting...

Sent Colby to school Monday morning. Got a call they were calling for an ambulance. Colby's oxygen dropped into the 40's. Okay, that happens sometimes. But this time is STAYED in the 40's, even after trach changes and 3 nurses helping him. Long story short, we went to Kosair ER. He was stable, oxygen in the 90's, off oxygen, looking good. Then he had a little spell where his oxygen dropped to 87 and I said nope, no way am I taking him home. I just knew something, although I didn't know what, was up with my kiddo. So we were transferred via ambulance to our home away from home, the Cincinnati Children's PICU. Yes, our second hospital stay at Cincy in a month. We went to the PICU because they didn't have a bed on the trach unit (TCC). A bed became available on Tuesday so we moved to TCC. Colby was acting more like himself by Wednesday afternoon so they discharged us. No answers really. A dr. who is very familiar with Colby said it was probably a lower airway plug, not a trach plug, that had to move around and work out. Sounds reasonable enough.

Then Kosair called yesterday and Colby's sputum culture showed MRSA. Uuuuuggggh, not MRSA! I asked her, you mean ORSA, because Colby has tested for that before. She said no, MRSA, and called him in a prescription for Bactrim.

Oh my, what craziness, huh? Can't we get through one week of school without some major Colby catastrophe? Just 4 little days, a total of 20 hours of school-related stuff that goes smoothly. You know, the way it's supposed to be. Kid gets up for school, kid gets ready for school, kid gets on bus and goes to school, kid's oxygen stays in the 90's while at school, kid gets back on bus and comes home from school. How flippin' hard can it be? Apparently it's a very tough challenge for the Russ household.

Since getting home from the hospital Colby has been doing well. I kept him home from school Thursday, he'll go back Monday. Yes, he's going to school. I didn't get the call about the MRSA until yesterday. Started Colby on Bactrim. He's had 2 doses so far. Colby's nurse will be here in a few minutes, so I'll wrap this up for now. More later as soon as I get a chance.

THANK YOU to all who hang in there with us. I know so many people care about both of us. Knowing we're not in this big bad SMA world alone keeps me from going completely nutsy insane. Okay, Colby's nurse is here, 3 minutes early, gotta love it.

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