WE ARE CURSED

I can't explain it. We have never had a smooth experience going from the PICU to the TCC (transitional care center.) And this hospital stay is no exception.

So we get to TCC late yesterday afternoon. I notice as the day goes on, Colby's belly is becoming tight and distended again. I tell everyone who will listen to me I think something is going on. It seemed to fall on deaf ears. I also wasn't overly impressed with Colby's day nurse. I know they have more patients per nurse, but still. If there's something wrong with my kid, he deserves attention. We noticed that his feeds were backing up into his venting bag. That ain't good. So instead of stopping his feeds and consulting a doctor about it, this nurse just clamps off his venting and continues to let his feeds run! OMG when I found that out, I was furious. Not to mention she bumped the rate up to 20 mL/hour without telling me. I didn't want them to do that! Wasn't until I looked at the feeding pump and noticed. I could have throat punched that woman. Once a doc FINALLY came around to talk to us, I threw her under the bus. I said look, I'm not sure what's going on with Colby, but her stupid mistakes sure aren't helping the situation, only are adding to it. We stopped feeds completely, again. In case you're counting, the score is ileus 2, getting back to home feeds 0.

The latest is they think Colby might have pancreatitis. There are 3 factors to diagnosis this, and if a patient has 2 of them then they say yeah, that's it. #1-pain-they're asking me, is Colby in pain? Well duh, would you be in pain or discomfort if your back was cut open a week ago neck to butt? Or if you had a gas/bloated tummy and motility problems? I told them Colby wasn't in any EXTRA pain, and he's not. He's not crying or moaning or wincing, and his heart rate and BP are normal. #2-lipase levels-If your lipase levels more than double, than can be an indication of pancreatitis. Colby's levels are high. Supposed to be 200-300 and his were 700's last night and 900's this morning. However, they also said that high lipase levels could also be another post surgery symptom, so that wasn't the best determining factor. #3-ultrasound-Colby had an ultrasound around 8:30 this morning. This is probably the best way to verify if he has pancreatitis or not. And of course nobody has been in to tell us the results yet at 1:00. I'm trying to stay calm. I'm trying to remember this is a holiday. Trying to remember that we're spoiled from the PICU. They are Johnny-on-the-spot, on top their game up there. Down here, not so much.

There are other little hiccups, too. Took us forever to get supplies for Colby's room (diapers and wipes, Chux pads, etc.) Luckily I was smart enough to bring some from PICU. We had to take Colby down to x-ray last night instead of them coming to do one bedside. I argued and went round and round with the docs about this. I said look, why are we going down there, just have them do the fucking x-ray bedside. Finally I got the answer that they needed a certain view of his tummy and that they needed him to lie down flat for this, not just flat in the bed. Okay then, why didn't you tell me this in the beginning, you little freaks? And Colby is on lipids, which are really, really thick, making his pump alarm constantly. I mean CONSTANTLY. It's been giving us fits since the middle of the night. I finally said look, do something with that thing before I rip it off the pole and pitch it out the window. Just dumb crap like that. My kid is sick, and I was already pissed at a nurse. Trust me, I didn't need anymore aggravation. It's the curse of the TCC I tell you. We're cursed on that unit! It doesn't like us. No love lost, TCC, trust me.

Either way, ileus or pancreatitis, the treatment is the same. Time. Give Colby's tummy/GI system time to recover. I've finally come to terms with this "he just needs more time" concept. I have a new attitude today. We're here as long as it takes. I will do whatever it takes to play nice with others and make Colby as comfortable as possible. I will ask for lab results and whether or not the nurse knows her ass from a hole in the ground in a very polite manner. This isn't about me. It's all about Colby and what he needs to get better and get home. Now we have GI on board (wait, didn't I ask for a GI consult like 5 days ago? Uh-huh sure did) We're going to figure this out, make a new plan of care, and get this boy better. Period. And if I have to take a couple dingbat nurses out along the way, so be it. Just sayin.

My college roommate lives close by, so she came over for a visit this morning. Really good to see her. And she brought us homemade lasagna and fruit pizzas. Really, really, really good to see her haha. Very sweet of her to spend some of her holiday with us. We love company. Helps break up the monotony of the day.

Well, I'm going to go back up and check on sweet boy. It's time for his next round of IPV and CoughAssist. Also want to get him up in his chair and I'm not sure what else. Try and keep him comfy and occupied. More updating later. Lord knows we're not doing anything else today. Just waiting on that boy's tummy to cooperate.