TGIF, you betcha! Slept in late this morning, well, if you consider 8 a.m. "late." Gave Colby his medications, he's still snoozing away. I have clothes in the dryer and the dishwasher is running. Thought I would take a few peaceful moments to tell you about our week.
Colby had a bumpy day at school on Monday, but other than that has had a great week. Did I tell you he had a pressure sore on his ear? It started out around the end of December as a small, red, slightly swollen bump. We were keeping a close eye on it. Then I came home from work one day. I hadn't even stepped fully inside and Colby's nurse says, you gotta come see this. Sigh, that's never good. Colby's ear had turned into a God-awful, stage 2, big, swollen, nasty sore. I freaked out! Called the pediatrician. Called my nurse practitioner friend to come look at it. They both suggested Bactorban cream. So we've been cleaning and applying the cream to the site 3 times daily and it looks 100x better. We've also stopped using Colby's Z-flo pillows and started using a little pillow shaped like a horseshoe so his ear can fit down in the hole and not be touching anything. I've always taken pride in Colby's skin. I've gotten so many compliments on how good his skin looks, how well we take care of him, etc, then this came along. But I think the issue is pretty much resolved now, thank goodness. Freaking episode over.
The furnace went out Tuesday. Of course it went out when Mr. Winter is at his worst. I ran some errands on Tuesday while Colby was at school. Once I got home, after a couple of hours, I kept thinking why am I so cold? The apartment was at 62 degrees, guess that would explain it! Sometimes I feel like we live in such a ghetto. They had to order a part for it. It wasn't totally shot because if you manually made this little door move down, it would turn on, so we were able to have heat that way. So it wasn't a total bust. The apartment holds heat really well, luckily. Guess I shouldn't complain the next time it gets stuffy in here come spring/summer. The maintenance dude came and fixed it yesterday, so that drama is done and over also.
We're moving forward with getting the new model of CoughAssist machine for Colby. I saw a pic of it compared next to the old model we've had for 10 years. No comparison. The new model is half the size. Plus it's portable. Do you hear me, it's made to be PORTABLE, meaning it's compact, has a handle and best of all, has a battery and runs on a charge. Hallelujah, praise the Lord, giddy-up, yee-haw, must have one. The pediatrician has forwarded the prescription for it to our wonderful, fabulous, delightful DME company (note the sarcasm.) We'll see what insurance and Medicaid have to say about it. If they denial it, we'll appeal it. If they deny our appeal, we'll fundraise and buy one out of pocket. In my opinion, it's a "must have" for Colby.
Cute eye gaze story: Colby was in speech therapy at school yesterday. His speech therapist likes to try and use his Passy-Muir valve (PMV) with him. Many people with trachs don't like them. So they turned off his vent and tried the PMV. Colby is not known to tolerate his PMV being on for long at all when his vent is off. Colby looked at his eye gaze and said, "ouch, mad." The speech therapist was like, well okay then, and took it off. Well done, son, well done indeed. So proud of him for communicating this thoughts and wow, has he made progress with eye gaze over the last couple of years. Can't wait to see what the next couple of years bring about with it.
Going to wrap this up for now. Need another cup of coffee and it's time to get Mr. SleepyPants up and going for the day. Thanks to all of you who checked in on me to see if I was out of my bad mood/funk last week. I am feeling much better, thank you. Not nearly as overwhelmed and irritated as I was. Just had to have a moment of "are you freakin' kidding me" on several issues. Things are better, for now anyways. Looking forward to a lazy day with Colby. I have him to myself until 5:00 when the night nurse gets here. Those are the days I cherish the most, when it's just my sweet boy and me, doing our Colby and mama thing. Bye for now.
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