STICK A FORK IN ME, I'M DONE

There's much good news to be shared, so allow me to do so. Colby is doing fantabulous with the pressure and rate changes we've made to his bi-pap. Today we moved his pressures to 23/7. Yesterday we moved his rate to 20. Home settings are 21/7 with a rate of 20, so he's really close. It's scheduled for us to go up to the TCC. I think that stands for Transitional Care Center. In my humble opinion it should be called TCU, Transitional Care Unit. That way you would have ICU and TCU, but obviously nobody asked me. Anyways, this is a big step up for Colby. It says he doesn't need the close supervision and equipment (vent) like he did in the PICU. I'm not fond of the TCU, we've had issues there in years past. But I'm ready for the change b/c it means we're 1 step closer to getting home. I already sent home 2 bags of stuff we weren't using back with Colby's dad when he visited yesterday. This morning Mom and I sorted through 3 big bags of snacks, yes, 3 bags, and I had her take some of it to her trunk.

There are ways of telling your kid is getting better in the PICU. They will start to DC (discontinue) things right and left. Colby is no longer getting daily lung x-rays, he's only getting blood gases once a day now, it doesn't take near as long to discuss his plan in morning rounds, etc. I decided to reduce his cough treatments from every 3 hours around the clock to every 4. However, he's still on all 3 antibiotics. I think day 9 of 14 for the 2 and day 4 or 10 for the other. Here's another hint. The nurses here in the PICU get no more than 2 patients on a shift. They will pair your child (not very sick) with another very sick child, usually 1 just getting admitted or 1 coming out of surgery. That way they can spend more time with the sicky. Basically it means Colby kinda gets the shaft. But that's ok. There was a time when my kid was 1 of the sickest and he needed all the nursing attention he could get. We don't mind helping more, making sure he's changed, rotating him to prevent soreness and bed sores, doing his cough treatments, etc. Anything that will keep him on schedule and get us out of here, I'm all for it. Years ago I used to do everything for Colby while he was in the hospital, change him, turn him, do his treatments, etc. But I've learned over the years to get the help here while I can because once we get home, it's a whole other story.

Colby is now the very proud owner of an iPad-2! Yeah baby. I don't know even exactly know it's capabilities, but I do know many SMA kiddos have one and the families absolutely love it. Don't know exactly how he got it either lol. There's an SMA mommy out there, let's just call her the iPad Queen, who helped facilitate us getting it. I was totally shocked when we opened it. Surprise, surprise, it's an iPad. Well alrighty then! For now it's locked away in Mom's trunk, too, because I hear it takes a while to get it hooked up and going. I obviously don't have the patience or brain power to handle that right now. Power chair, communication device, iPad. Colby is quite the high tech red neck these days.

Above is the good news. My gripey news is below so if you stop reading now, don't blame you. Last night, after they put Curtis Painter in as Colts QB, I just went to bed, couldn't handle it. Got a sleep room so Mom stayed here in Colby's room. I came back down about 7:00 this morning and guess what Mom tells me? They came in here at midnight and tried to switch Colby's settings down, AGAIN. Sneaky little shits. Without consulting me, without my knowledge, just poof, change his settings. But good ole Mama Linda was on top her game. She said absolutely not. What is your justification for doing so, is his blood gas off? They said no. She said don't you dare move those settings until I call Amy down here. Then they changed their mind and left them alone until we discussed it in morning rounds. WHAT THE HELL?! Why would they do that?! You know how many times I've gone on and on about them changing his pressure setting before it's time. Plus this is the 3rd time we've "caught" night shift trying to make decisions without consulting me first. It's ridiculous. I thought about raising a huge stink, then I thought we're leaving this unit tomorrow, so just forget it. Overall I've been very pleased with the care Colby has received so why leave on a bad note. Just want to get us HOME. SOON. I'm thinking Saturday or Sunday. Keep you posted.