What A Way To Spend The Day!

Happy 8 month birthday today, Jordan. There were a couple of months in there that I really didn't believe we'd get this far. But despite everything, you're hanging in there, and really giving the medical community a run for their money. You've got them ALL stumped. They all have their theories, but until they can tell us what to do to help you, or even what to expect, I try to take it all with a grain of salt. They're interesting, for sure, but not helpful. You are who you are, and that's okay with us (but really, couldn't you let us sleep just a little bit more?!?!).

Now for some of the technical stuff for the day -- so I can clear my head and try to sleep (Devon is taking the 00:00 to 04:00 sleep shift tonight. [This blog has become my nightly mental download, if you haven't guessed that already, and now I find it hard to sleep without setting my thoughts free through the keyboard.]

I can't really complain too much about the care this time. A couple minor hitches (almost all having to do with blood -- failed collection attempts and IV starts, PICC line complications), and the resident that was on tonight that was a complete ass to me because I complained when Jordan hadn't gotten her potassium drip 4 hours after her potassium levels were starting to drop. She started to get irritable, fussy, uncomfortable, and to throw tantrums. Mind you, nothing that Jordan presents as "normal," but I definitely know when her mood is changing, and Dr. Larvalform (alias) wanted to know what I thought we should do to improve the situation. GIVE HER POTASSIUM I suggested, to which he countered that that normally K depletion doesn't make kids irritable (it does, however, put people at risk for heart failure, which worries me more than the fussiness). His suggestions: feed her (she has NEVER responded to food, part of the reason for the G-tube, and I had been extra feeding her all night to make up for the half-day of food she missed today), and dim the lights, (she can't see anyway, what good is that going to do?!?!?). Again, as I've said before, nothing is "normal" with Jordan, and after another hour of screwing around, they gave her the K, and she settled down within minutes. Seriously folks, I GET that we don't necessarily know the answers for Jordan, but PLEASE!!! just admit it and do what you can to make things better. Don't make me out to be a hysterical parent because I think my kid's getting fussy--when she is!!!! And, not only did she settle down behaviorally once she got the K, her pulse slowed down, and her blood pressure eased up, too. Uggggghhhhhhh. I liked yesterday's docs a whole lot better. There was way more chaos and confusion yesterday, and wayyyyy better care.

Devon lost it today and chewed out a nurse (who inherited the problem) about taking 13 hours to fix her PICC line. After 12 hours, when they were FINALLY ready to give her the K, the line wouldn't work, and the IV unit had been ignoring her since 09:00. Get this -- I went and asked if they could just give her the K in a regular IV (so we wouldn't have to wait to get the PICC line fixed), and in the end we ended up giving it to her in her g-tube!!!!!!!! She could have had it 4 hours earlier with no PICC issues at all!!!! BTH: K is too caustic to put directly into a vein, it would eat it up, hence the PICC line.

Oh my goodness, am I ranting or what. I really shouldn't complain, things have been pretty good here, and for the most part Jordan is improving. As you can tell from above, her potassium levels dropped this afternoon, after making a very strong comeback this morning (after the K drip). Na dropped a little, too, but not enough to correct. Blood pressure is holding steady without meds (still a little too high, but slowing improving), and she's almost back to "normal" in terms of temperment (the screaming is about 80% gone at this point). She's still a cartoon-looking sumo wrestler, I understand that cushionoid look (edema) will take awhile to clear. We don't know why her K dropped, but the nurse and I have a theory that it has to do with her diarrhea (what a MESS that continues to be).

Well, it was a busy, but relatively good day to turn 8 months old I suppose. At least we made it here in one piece, despite all the bumps in the road. Happy 2/3 year birthday, Jordan.