UPDATING FROM HOME SWEET HOME

Colby and I are home finally, after 37 lovely days in the PICU at Cincinnati Children's. (Hope you can recognize sarcasm when you see it). Today has been emotionally charged for me. I have lots of thoughts and feelings running around in this brain of mine. But I really don't feel like getting into all of that right now. So I'll just stick to the facts and tell you the 411 for the last few days.

We got home Saturday afternoon. The ambulance was right on time picking us up. One of the EMTs was very nice. I enjoyed talking to him on the ride home. The other EMT had the personality of a door knob. He didn't even introduce himself, say hi, bye, boo, kiss my butt, nothing. I find that very unprofessional. And speaking of unprofessional! I shit you not, we were leaving the hospital and he had 1 hand on the steering wheel and 1 hand down in a bag of Munchos. I'm not kidding, I should have taken a pic! When we got home my dad was here to help us unload everything. Then my BFF Kim came over, bringing me Chicken McNuggets and Diet Mt. Dew, to help me get things unpacked. Mom and Kenny also came over to bring over some stuff I had sent home with Mom. Once everybody cleared out, I went back and cleaned and disinfected the crap out of Colby's room. Dusted, wiped every piece of equipment down, changed out all the filters, tubing and masks. No way any germs survived that cleanliness onslaught.

The last couple of days have been a combo of trying to relax and get loose ends tied up. Lots of phone calls to make. My favorite thing to do as you well know. Not really, gosh dang, I despise it! I've started keeping a notebook of who I called, what day and time I called, the result of the call, etc. I learned in the hospital that having good notes can prove extremely helpful. Colby is doing fantastic. Today his 1st bipap break was a little iffy. He was able to stay off an hour, but after 30 minutes or so his heart rate was between 122-130. A little too high for my liking. His bipap breaks after that were much better. He was able to stay off bipap for 1 hour 15 minutes, no problems. He's been taking naps, which is great. Gee, I can't imagine why he's tired, just because he hasn't had a full night's sleep since around March 20 or so.

As for me, well, I'm kind of a mess. First of all, I'm not completely caught up on sleep. Having trouble going to sleep and staying asleep. Guess I'm still on hospital time. I don't think the emotions from this hospital stay have caught up with me yet. Sometimes you need a little time to process and work through it all. Would you agree, or am I just slow?! I'm trying to balance spending as much QT with Colby and getting out and doing adult-type activities also. I have a gift certificate for a mani/pedi that I got for Christmas. It'll expire in June so hey, Mama ain't no fool, I'm going for my pampering tomorrow! I think it will do me good to get out for a bit.

We were goofing off one day at the hospital, imagine that, and decided that we no longer like "E" words. For example, the word extubation literally sends cold chills down my back. Considering Colby's history with this, it's understandable. Another stupid "E" word, extravasation, meaning the leakage of IV drugs into surrounding tissue. You remember that special day, when Colby's port wasn't working properly and his TPN leaked out? That was indeed a freaking nightmare. Edema, what a jacked up term that is. The "edema" around Colby's port was making accessing the port extremely difficult. Yeah, no crap, which explains the extravasation that followed. Effusion. Now there's a word I don't ever need to hear again as long as I live. Effusion is a buildup of fluid outside of the lung. Colby had effusion forever it seemed. Took weeks to clear it up. Thank God for postural drainage. Of all the fancy equipment and meds, positioning Colby with his head lower than his feet proved as effective as anything for getting rid of that effusion. Go figure.

I'm going to wrap it up for now. Just wanted to let everybody know we're doing pretty darn good considering how the recent weeks played out.