KID UPDATE

Overall Colby is great - freaking fabulous really. I never take Colby's health for granted, NEVER. I'm very grateful he is doing as well as he is. However, everything around Colby had been a bit of a mess over the last month, but is now getting better. I know this will shock you, but we've had some nursing issues. Can you believe it?! (Insert long sigh and eye roll.) We've been short 56 home nursing hours/week for 3 weeks. Now listen, I'm NOT complaining. I love taking care of sweet boy all by myself. And he might not admit it, but I think Colby prefers it, too. I'm simply stating the facts here. And it has been rather bad timing with as much stuff as we've had going on at the house recently. Yes, I'll be blogging about the house in another blog very soon. Our one full-time nurse went on paternity leave. Now he wants to move his schedule around, working longer shifts and being here fewer days. Ok, we can accommodate that I think. Another home nurse who worked 4 nights/week went down to 2 nights/week. And I went to school with Colby and another new nurse through the school system's agency for several days to get her trained to ride the bus and attend school with Colby. She is very good, and I think she'll do just fine with Colby and the school gig. She reminds me of the awesome nurse Alli we had a couple years ago. I'm just thankful nursing is getting back to normal. For how long, who knows, but it's looking pretty good right now.

Then there is the never-ending bullshit problems with ordering Colby's respiratory supplies. We are in the process of transitioning to another DME company. It's not as easy as you might think. You can't just pick up the phone, call and say hey, we'd like you to get all Colby's equipment and supplies now. It takes time. I had to sign release forms. Then the new company, James Medical, has to get orders, i.e. settings and pressures from the doctors. They also have to get the template form from Cincinnati ENT to order Colby's custom trachs. All kinds of stuff like that. They ordered an IPV machine for Colby, and lo and behold, it was the wrong one. SMH. They ordered the big honkin' green monster machine instead of the smaller, more portable IPV-HC model. We're slowly but surely getting there though. So far they've been a wonderful company to work with. Just hoping that trend continues.

Colby is out of school this week to get his Zometa infusion. He gets this medication 2x yearly to help with his low bone density. We're lucky that he tolerates the infusion well enough that we can do it at home instead of having to go to Cincy. I kept him home from school Monday so Walgreen's Infusion could come out and draw his pre-infusion labs. Tuesday the infusion nurse came out and gave kid the Zometa, along with a large saline bolus. Then it's best to keep him home for a couple of days and keep a close eye on him. There is a possibility the infusion would cause flu-like side effects. Colby has had a few episodes of high heart rate, but ibuprofen tackles it nicely. Friday starts his Fall break, so basically he's out of school all this week. He's really bummed about it, NOT.

Here is a recently pic of my sweet boy. As you can see, the last time I cut his hair we went back to a faux hawk style. He got his school pictures taken a couple weeks ago, but we decided to do more of a mature, laid-down hairdo. He looked incredibly handsome in his button down shirt. Can't wait to see the school pics proofs. 

Ok, I need to wrap this up. No nurse until 5:30 tonight. The infusion nurse will be here in 1.5 hours to draw Colby's labs. I'm still in my nightgown and haven't started Colby's morning routine yet. More blog updates soon. Be watching.