WHEELCHAIR WOES

The good news is Colby has his new power wheelchair. We went to Cincinnati Childrens in August and got it all lined out. There are many, many things to consider when ordering a wheelchair for someone as medically complex as Colby. First he was going to get the newer model wheelchair. Then I was told the tray that slides onto this wheelchair would be permanent. Nope, won't work. I have to be able to take off the tray to get Colby in the van. So we were able to get the same style of wheelchair Colby had before with new seating, arms, head piece, etc. Colby's chair was delivered December 28^th, which is amazing! We've never gotten a wheelchair that quickly before. It has to go through insurance, which always denies it. Then it goes to Medicaid for approval. Once it's approved, then it has to be ordered and built. So getting the wheelchair within 4 months really is incredible. The bad news is we've had some problems with it, especially the head piece. Of all the parts and pieces Colby needs to work properly on that chair, it's the head piece that's THE most important. We (two wheelchair dudes, PT, and whoever else wanted to take a crack at it) have worked hours on that damn thing. I'm ready to roll that chair in the Ohio and watch it sink. My opinion is the head piece was fault from the start, which is hard to believe because both his old and new head pieces are made by Stealth. Not sure how we had such good luck with the one on his old chair and such bad luck on the one on his current chair. Actually we've been using the old head piece on his new chair because the new head piece is that crappy. Lovely.

So that will be appointment #1 tomorrow. We'll leave here around 7:30 tomorrow and go to the Perlman Center to get this wheelchair looked at and hopefully fixed. After that, Colby's appointment #2 will be getting labs drawn. Unfortunately they need to be drawn peripherally, meaning they will have to stick him to get the blood. They aren't able to draw the blood from his port because they need to do a PT and PTT to look at his clotting factors. You can't do this test with blood from a port because there is heparin sitting in his port, and that will mess up the clotting factor values. I hope this peripheral draw goes as easily as the one he had done at Cincy in December. I had the lab technician call the Vascular Access Team, who brought an ultrasound machine to find the best spot to access Colby. One stick, which is fantastic. Hoping for the same tomorrow. Then we can head home. Really hoping to be back on the road and home before afternoon traffic starts getting crazy.

I don't know if it's proper or not to ask for prayers for a wheelchair, but I am. Really hoping the Savant or the HeadPod that Colby tries tomorrow is the solution to his head piece issues. I'm not giving up until we have this resolved. Can't have sweet boy's head not properly supported. We'll see.