BAFFLING, PUZZLING, RARE

These are the words that have been used to describe Colby in the last couple days. First day of school, fantastic. Second day of school, sucked big wienies. Colby's nurse called me and said, uh Amy, we're suctioning blood out of Colby's mouth, a lot of blood. So I left work and picked them up. We got home. Got Colby comfy. Then his nose started bleeding. My nurse practitioner friend, Tami, came over to take a look. Too hard to see anything, really, because of all the bleeding. Then blood starting oozing out his trach a little. That's it, we're going to Cincy. So we through some necessities in the Terdmobile and away we went. Colby's nurse rode with us, Tami followed. And so the fun began...

While in the ER, ENT tried to do a scope. Too much blood to see source of bleeding. They assumed it was a nose bleed. Put some FloSeal in Colby's nose hoping it would work. It didn't. Trach Unit was full, so we went to our home away from home, the PICU. Honestly, I'd rather go there anyway.

So I'll try and sum this up the best I can. ENT has tried various options with Colby. Bedside scopes, packed his mouth (awful, Colby has to be sedated the whole time), packed the right side of his nose. Took Colby to the OR where ENT did some investigating. They found a tiny abrasion/lesion on the back, back of his nose and also a lesion on his tongue base. What the crap?! We have no idea how this happened. They cauterized the lesions, back to the PICU we go, hoping things will improve. Started Colby's feedings back and also his cough treatments (IPV and cough assist, just like home). BAD idea. As soon as the cough treatment was done, the bleeding started back. And I'm not talking about a "tinge" of red running through the suction tube. It was bright red blood, active blood, filling up the entire tubing, as it has been over the last 24 hours. Of course it's mixed with secretions, but even a little blood is enough to scare the beJesus out of you. Had to pack Colby again. Hold feeds again. We're going to have to get another shirt for Colby that reads, "ok, how everyone has been in my airway" because that's what it seems like. Second day of school! Can you believe this shit?! It's like a really, really bad dream and I wish to wake up now, please and thank you.

Here's where we stand now. All of Colby's blood work indicates he has no clotting disorders. That's good. We think we have the source of the bleeding figured out. That's good. Yesterday his chest x-ray looked "hazy" on the left side, but today's x-ray looks better. That's good. Now if we can just get the bleeding to stop because bleeding is bad! Very bad. We can't do his respiratory treatments, as they agitate the area, which starts the bleeding again. This is what is freaking me out the most. My SMA Type I child lying there and we CAN'T do his normal respiratory routine.

All of this came out of the blue. I'm completely shocked, pissed, frustrated. Colby acts like he doesn't feel well. Of course he doesn't feel well. You know how gross it is to taste blood. He hasn't been able to eat. Plus his ding-dong mama forgot to bring his glasses, so he can't see worth a crap. Way to go, Amy.

That's the latest. As soon as I have more info, I'll update. THANK YOU to those who have offered to help in any way. I know Colby has so many people who love and pray for him, and me too. Also, THANK YOU to Colby's nurse and Tami for coming up here with us. I know we got him here faster than if we tried to arrange for an ambulance. Just so ready for this nightmare to end.