Saturday, May 11, 2013

THIS IS SO NOT COOL

Okay people, listen up. There's a lot going on around here. Some changes to our plans. Can you imagine? Something we planned, not going as planned. I swear, there are days I wonder why I even bother.

Got a call Thursday at 4:30 from the ortho nurse at Cincinnati. I could tell immediately by the sound of her voice this wasn't no social call. Colby's labs were abnormal. More specifically, his clotting and coagulation labs. Most specifically, they wanted to redo labs for PFA epi, PFA/ADP, a TEG, and do a vonWillenbrand's profile. For some unknown reason, she insisted that we drive all the way up there to have these labs drawn. I guess doing it there would guarantee the fastest results. I won't go into all the details, but the day was a total clusterfuck mess. It was awful. What should have taken less than an hour to accomplish, well, we were there for 4 hours. By the end of the day, I was so mad I was shaking. I didn't know whether to cry, scream, throw something, or all the above. The ride home wasn't any picnic either. Got stuck in freakin' traffic because of a freakin overturned semi. I was never so glad for a day to be over in my life.

Okay, I digressed a bit there. Sorry. So what does all this abnormal lab stuff mean? For starters, it means we need more time to get these new results back. The ortho nurse called another family whose son was having the same surgery, same surgeon, on May 20. They were kind enough to change dates with us. He'll take Colby's date of the 15th and Colby will take his spot on the 20th. Best case scenario at this point, Colby will test positive for the vonWillenbrand's. It's a pretty easy fix. They just give Colby some sort of medication before surgery and we can proceed on the 20th. If it turns out he doesn't have VW, then things become even more clusterfucky than I even care to think about. If he doesn't test positive for VW, then they will want to do a platelet aggregation test on Colby. There is only one doctor at Cincy who does this test, and it takes 6 weeks or so to get the results. The ortho nurse looked ahead at the surgeon's calendar. His next availability: September. Yep, I'm not fucking kidding, she told me either Colby has VEPTR surgery on May 20 or it will get pushed back to September. Honestly folks, if that happens, I'm pretty sure I'll have a breakdown/meltdown/conniption fit/visit to the funny farm.

So that's where we are, in a place I totally didn't see coming. In a place I flat out don't want to be. I had to work today, so I haven't had a lot of extra time to research these tests. Any way you slice it, it's a load of crap. They are supposed to call me Monday or Tuesday with preliminary results of the labs Colby had done yesterday. I'll pass along more info as I have it.

1 comment:

  1. Wow Amy, I'm so sorry to hear all that. I was wondering what was going on. I haven't been able to get in touch with you and was worried. Now I understand. You sound crazy busy and stressed for good reason. We'll be thinking about you all during our craziness this week. I'm not sure if you seen my post about Chase, but I had some concerns about the intubation having to be oral & not by trach. That was one reason we decided on the trach to make things like this smoother. The presurgery Anesthesia appt. got me a little freaked out. I will be glad when this is all over and I know you are feeling the same. I'll keep checking Colby's updates to see how things are going. Try to hang in there and focus on the outcome after all this crap is said and done with. Also, I know you are probably too busy to talk, but if you get a break and want to, call me. I don't have your # anymore, since I got my newer phone, but my # is 513-405-1468. Take care. I hope Colby is doing ok with all of this. It's hard to know how much to tell them. I've tried to explain it in simple terms to Chase, but I think I got him a little worried... he keeps telling me "All done with hospital"... and we aren't even there yet. :(
    Take care and hopefully we'll talk soon.
    Sherry

    ReplyDelete