Inpatient saga continued

Thursday evening (12/18) a resident came up from interventional radiology (IR) to have us sign consent forms for the PICC line placement. Which they wanted to do on Friday (12/19.) We told him that one of us parents would need to be in the room and he said "that shouldn't be a problem." Well after I left for the evening a resident came in and said state law prohibitied parents in the treatment room in IR) during the PICC line placement. That was a lie, the state doesn't mandate things like that. Friday morning before I got here (and I got here at 8:20) the peds attending comes in (btw, we don't really like him, we tolerate him as a necessity) and tries to convince Steve that it's unneccessary for us to be in the room. Steve says something to the effect of nice try but we need to be in the room. Then another resident comes in to explain about how there's radiation in the room and it's a sterile field etc. Steve says, nice try but there's radiation when she has the other procedures too and we can be away from the sterile field and still be in the room. So I get here and they round (in case you don't know or recall rounding is where the whole team comes around and discusses your case, it's really just a teaching tool) and they say they're going to discuss our PICC issues with the PICU and see if one of their nurses will do it. (Previously it was always the PICU nurses who did PICC placements at the bedside.) They come back around like 10 or so and say that there's only one over there who does it and she's too busy, and they start talking alternatives which frankly suck because it means being here for the full course of abx and at that point we didn't know how long that would be. So I try to have a converstion (mind you I'm speaking to a person who has lied to us) she keeps using the phrase "peds anesthesia" as the folks who would administer the sedation (it's conscious sedation they don't put you to sleep which is part of the reason we're so adament about being in the room, that and the fact that Katie is TOTALLY FREAKED OUT about the whole process, like starts crying as soon as it gets mentioned.) so I decide that maybe I can talk to someone in peds anesthesia and get comfortable since I know most of them. So I tell the resident that and she agrees to have them come up (which they should have anyway imo and we were told by the first IR residnet that they would come up but they never did until we asked.) Then another idea dawns on me that maybe someone from child life could come in the room with her so I ask one of them as they're walking by and they say "sure we do it all the time." So we talk to Katie about that and this seems like a possibility for her. Then peds sedation comes NOT peds anesthesia, and they were very nice but they tell us things that we didn't know that are frightenting or bring back bad memories, that her arm will be extended onto a little table (she remembers this from the transplant surgery and it was scary), and that the line gets secured with a stitch (her central line after the transplant was secured with a stitch and removing it was a very scary procedure.) So then she's CRYING HYSTERICALLY by the time they leave. But I get her calmed and convinced that we can go forward and the resident comes back (its now 1:30pm btw) and says too late they can't do us now we missed the window because we didn't make a decision early enough. Mind you we were never told there was a window, in fact we had asked for any kind of a time frame and they couldnt' give us one. Basically it was Friday and everybody wanted to go home early (and I'm not kidding!!! we were told "well you know it is Friday afternoon") We PLEADED with them to ask IR to make an exception and we got now where. We got social work involved and nursing called a patient advocate.. nothing. I lost it, I started crying and could not stop. I kept trying to come back into Katie's room but I could not stop crying. Meaghan the social worker saw me and took me to another hallway to talk but I still couldn't stop crying.

Eventually I did and I left the hospital for several hours last night to go get Katie some craft stuff. It's really hard for her not to be able to go to the teen room (as you can tell by the number of times I mention it) so I brought the craft portion of the teen room to her. Luckily for our budget they have all the stocking stuffer stuff out so I was able to get a ton of really cool kits for $1 each. It really helped me to get out of here and get some fresh air and some perspective and distance.

The thing is that we would have been stuck here all weekend anyway even if we would have gotten the PICC because by the time they confirmed what the meds would be (she's on stuff but they were awaiting culture and sensitivity just to be sure that the bacteria hadn't changed from the last culture) it was too late on Friday to set up home health. See you might think that hospitals are 24/7 facilities but in reality unless it's a trauma situation they only handle basic care outside of banking hours. It sucks!

I had hoped today (Saturday 12/20) would be drama free but we did have a smidge of drama this morning, that we were able to fairly easily resolve. They came in and drew her blood, and then at like 9 phlebotomy stuck their head in and said they were here to draw her blood. I said.. umm she was just stuck 2 hours ago. so I go out in the hall and her nurse says it was a bad stick this morning and they had to discard it but she thought the residents were going to restick her so she called them. I got on the phone with Steve (he's at home because of another saga about catheter size and how they can't get the right supplies here so he's waiting until our amazing little neighborhood pharmacy opens to see if they've gotten them in yet) and told him what Carol said and that she said her glucose from that bad sample was 900... LOL she'd likely not be conscious with a blood glucose of 900. So we were prepared to argue that by history that's clearly a bad result and could the y just redraw tomorrow since she's been stable. But the attending basically said the same thing as I did. They may still have to restick her this afternoon after the prograf level comes back and they call that into Dr. M because we dont know if the prograf level would be affected by the glucose or not.. but come to think of it she won't want her restuck because they only run prograf twice a day at 7:30 and 10:30 so might as well wait until tomorrow... cool.

The resident in rounds this morning said that Katie has pylonephritis in the allograft (in english that's enflammation of the kidney in the transplanted kidney) which is different that the diagnosis we had been talking about which is uti of the lower urinary system (aka the bladder.) So I let them finish and then asked if there was something that had changed to change that diagnosis or was that just wording and the resident said not changes she had pulled that diagnosis off of something else (little ugh! because it was just wording but still these guys have got to be more careful and thorough.)

So... the PICC line placement is scheduled for Monday (12/22) and IF it gets done early AND we can get home health scheduled for that evening we could go home then but a.) it's not likely that those two things will happen and b.) even if they did we'd have to come right back here at 8:15am Tuesday morning for the next cytogam infusion. So... we're likely here until late Tuesday afternoon.

And that brings you up to date. If you read the whole saga you deserve an award but it would be dwarfed next to the one that the three of us deserve :o)