CAN'T COME UP WITH A TITLE WITHOUT CURSING

I thought I had blogged since Wednesday, so my apologies for not updating. My brain isn't exactly in tip-top shape and lately I have the attention span of a gnat. I'm sure you can under...SQUIRREL. Anyways, I'll try to do better.

Colby had his port placement surgery on Thursday. He was on the add-on list. First someone from surgery came up and told us they would be up to get Colby at 11:55. Again, not 11:45, not noon, 11:55. Well, she was a big fat liar, and we kept calling surgery to check. Surgery kept saying 1 hour, 2 hours, 1 more hour, etc. Long story short, Colby's had surgery around 4:00. By 6:00 he was back in his room, resting and recovering. Surgery went fine.

Okay, here's where it gets tricky. He came back from surgery with his port NOT accessed. Hmmm, what was that all about? That has been an ongoing debate for a couple of days. SQUIRREL. Here's my thought, and I'm sure you'll agree with me (or at least you should haha). They had to access the port to see if it worked and flushed it with heparin. I know this was done because I read the post-op notes. So why in the world would they de-access the port?! This remains a mystery. The post-op report says "per instructions" not to leave the port accessed. I'm not sure if some dumb butt in the PICU told surgery this, or if there was a miscommunication, or what. Doesn't really matter, the port wasn't accessed, period, which now brings me to the next lovely section of the story.

So the central venous team nurse shows up yesterday to access Colby's lumens on his new port. Now remember, the whole idea behind getting this port was to have easy access and that Colby wouldn't have to be stuck and poked all the time. This is exactly how I explained to Colby why he was having surgery, so that when he goes to get blood work done or needs IVs, they don't have to poke him over and over. I also told him they would come in, access his port, and take out that uncomfortable IJ that has been in his neck for 3 weeks now. There's one word to describe accessing Colby's port: disaster. No wait, actually there are 2 words to describe it, fucking disaster! She started feeling around where Colby had surgery and he immediately started crying. She said there was still a lot of swelling. SQUIRREL, HUH? She also said that accessing a port was done mainly by touch and she was having trouble figuring out where to put the needle. Oh boy, are you kidding me? Honey, don't you do this all the time? Isn't this your J-O-B? She tried to access the 1st lumen, no luck. Shit. She tried to access the 2nd lumen, no luck. Shit. Colby was crying, big tears rolling down his face. I couldn't stand it. I didn't want to give him morphine because we're so close to extubating him, but felt I didn't have a choice, so we gave him a 1-time dose of it for the port access. Then this central venous ding-dong ho-bag nurse decided to try another size needle and poked each lumen, AGAIN, and still couldn't get access. I said that's it, you're done. Go away now, bye-bye.

I cannot begin to tell you how upset I was when all this happened. Colby probably thinks his mama is a big, fat stinkin' liar. Hey Colby, you're going to have surgery tomorrow. Nah Colby, we have to wait 2 days for surgery (thanks Dentistry, I owe you one, terdbuckets). Hey Colby, we're going to get you a port so we won't have to poke/stick you all the time. Nah Colby, we just tried 4 sticks and still couldn't get your port accessed. Hey Colby, we're going to get that nasty IJ line out of your neck. Nah Colby, can't do it because we can't get your what-is-supposed-to-be-simple port accessed. DAMMIT, I've asked this so many times before. Can't 1 thing just go easily for this kid?! Just 1 time, can't we say this is what we're going to do, this is the expected outcome, do it, and actually get that outcome?!

That brings us to today. Besides the port issues, Colby is doing super fabulous. X-rays for the last few days have looked great. No signs of pneumothorax or effusion hanging around, woot woot. Actually I wanted to extubate him yesterday. But the attending recommended we wait because #1, need to get port accessed and #2, need to have "all hands on board" when he's ready for "E". Mainly we need to have anesthesia standing by in case Colby needs to be re-intubated, which unfortuneately we know he was a history of this. FERRET? As of right now, this exact moment, this is the plan: someone from oncology is going to come and try to access Colby's port. These chicks access ports all day every day. I said don't send us "someone" send us your rock star. I even told the nurse, use those words. "Do you have a rock star nurse who can access a difficult port?" She's getting ONE poke. Right now we just need access from either lumen, not both. ONE try. No morphine. All I can say is the PICU better be hoping, praying and doing their happy access dance. Because if this doesn't fly, I'll be even more upset than I currently am, and that's no good. I didn't yell when Colby's surgeries got rescheduled (twice). I didn't yell when they said let's wait til Monday to extubate. I was upset yesterday with the whole access fiasco, but again, I kept my cool. Didn't fly off the handle at anyone. But, here's the deal. If this port doesn't get accessed today I won't let them extubate Colby and he is READY! This is the optimal time for him and his best chance for success. We don't want/need anything f-ing that up.

It's been a roller coaster of emotions the last couple of days. So happy he breezed through surgery. So happy he's ready for "E". So upset the port isn't accessed (either lumen)! Right now we'll take accessing just one. So ready for this mess to be over. So ready to go home, get settled, get back to our "normal" lives.

I'll keep you posted. CHIPMUNK. Right now just waiting to here from the rock star oncology nurse. Waiting. Seems like we're always waiting. Like my dad always says, hurry up and wait, hurry up and wait.