THURSDAY UPDATE - CLINICAL

Sit down, buckle up and hang on, because it's been a bumpy ride around here lately to say the least. Allow me to elaborate.

We were all set to extubate Colby (take him off the vent and put him on bi-pap) for late Monday morning, after the docs finished rounds. I went to Ronnie Donnie to sleep, as the day Colby gets extubated, "E", can get pretty crazy. Colby has failed "E" many, many times in the past, God love him. I get a call from Mom at 4:40 a.m. that there is a problem with Colby's port. So I jump up and get back to the hospital, crying and cussing like a sailor with every step I took. There was a problem for sure. The TPN was not running through his port, but was leaking out (infiltrating) into his tissues. This can be very serious and can cause all kinds of issues, skin breakdown and blistering and who even knows what else. So they gave Colby 5 tiny shots around the infiltration with an antidote. It's the same thing they did when his IV leaked out the Epi last hospital stay. Thank goodness it worked! We were successful in avoiding any further problems with the infiltrate. (This is where you sigh and say, crap, can't that kid catch a break?!) Apparently the answer is a big, fat, hairy NO.

Later that afternoon we took Colby down to IR (intervention radiology) where they finally, after who knows how many failed attempts, were able to access his port properly, both lumens. For the love of corn! Getting and accessing a port is supposed to be easy-peasy, not some clusterfuck mess like Colby's ended up being. But that port access issue is now fixed so now we can move on to extubating Colby. He should fly right through this, since his lungs have been in great shape for days, right?

WRONG!! Yesterday we tried to extubate Colby. We had all our duckies in a row. Everything was planned out. We had a rock star RT. We had all our bi-pap equipment lined up, ready to go. We had a plan ready to do this if this happened, do that if that happened, etc. We had our plan on how to give cough treatments. Colby did excellent for the first 6 hours. He didn't have the first little problem or bobble. Then WHAM, he went into distress. His oxygen dropped from 98 to into the 30's in no time flat. Nobody was around him bothering anything, just out of the blue he started struggling. He didn't officially "code", although his heart rate was starting to drop. Long story short, we were able to get his oxygen level up quickly. Anesthesia was there immediately and we were able to re-intubate without complications and time wasted. So, Colby is re-intubated (back on the vent). Doesn't that just really, really, really, really suck? I mean really?!

More than likely what happened is Colby got a mucous plug, or his right side may have collapsed some again. I think they were able to pop his lung open when they were bagging him, or maybe it popped back open when we put him back on the vent. If you look at his chest x-ray from this morning, it looks beautiful. You'd never guess he had those problems yesterday. If I had a dollar for every time I've looked at Colby, said WTH kid, well then I'd have a heck of a lot of dollars.

So what is the plan from here? Well, that is a very good question. I've been talking to the doctors, my family and friends, and other SMA families I trust. And of course I've been talking to God and my gut instinct. Based on Colby's repiratory behavior these last 2 hospital stays, I think it's time to tweak Colby's care plan. I'm wondering if it isn't time for Colby to have a trach. And NO, none of the doctors here are trying to talk me into it one way or the other. Not one person here has said, well you should do this, or this is the obvious choice for Colby. It's not their place to make that decision, it's MINE and Colby's. First of all, there is no obvious choice. Every SMA kid is different and what has or hasn't worked for one may or may not work for another. Second of all, Colby and I will be the ones living with the day-to-day trach stuff. Not the PICU docs, not the nurses.

So that's the clinical what's up with Colby lately. It's just a mess. A big, giant, horrible, stressful, awful, unfair, unwanted SMA mess. When we have rounds in the morning, we'll talk about the next step for Colby, when we'll plan to try and "E" again. That's all for now. Told you it was bumpy. Tomorrow is day 28, but who's counting? I am dammit, because I want to take my sweet boy and go home!