Friday, October 17, 2008

The infection of a triplegic

Sorry it has taken so long to get things updated. Life around here has been nuts since Needlenoggin came home, with doctors' appointments nearly every day, my school about ready to start back up and moving everybody in to the new home. This update covers him through about 10/25.

So, let's start with the title, huh?

Needlenoggin came home on 10/4, and had his first check up at the GP (back at Highland Hospital, as they're the only place around here that takes MediCal). We get in, are made to wait for an hour and a half, and then are ushered in to see Dr. "F-is-for-fail." (Can ou tell how well this is going to go?) Anyway, Dr. F sits down with Needlenoggin and I and I hand over all the prescriptions Needlenoggin is taking that need to be refilled, and say how glad I am that he got an appointment so quickly. Dr. F looks at me, rolls his eyes at the Rx papers, and then opens his BLANK manilla envelope, looks over at Needlenoggin and asks, "So, why are you here?"

Ummmm... Needlenoggin is too shocked to respond, so I start to fill te guy in. :I didn't ask you," he grumps. Yeah, I know. But Needlenoggin's memory is shot and he doesn't know the dates he was here, so maybe you should listen to me. Turns out, the guy hadn't picked up any of Needlenoggin's records from down the hall at Medical records, his fax machine was broken, so he'd never received the ones from Valley, and he had NO IDEA who my brother was or what was wrong with him.

He agrees to refill the Rx forms for one month, then makes an appointment for us to come back in December, and tells us he'll need the records before he can refill the scripts further. To re-cap, "Here's 30 days of meds. Come back in 60 days to talk about getting more." Oh, and then he changes Needlenoggin from Percoset over to Vicodin (for breakthrough pain) without asking why or even telling us he was doing it (just wrote a different script) and writes for all EXCEPT Needlenoggin's anti-anxiety medication. When we ask for that one as well, he tells Needlenoggin, "If you're going to be my patient, I'm going to take you off of that," agrees to write a VERY temporary script, and says, "He looks fine to me, so I don't think he needs it."

Really, you got all of that from not wanting to talk to me, a few words from Needlenoggin and your what, gut feeling? Idiot.

Wen we get his little form back, we realize he's written Needlenoggin's diagnosis on it. "Hemiplegic."

Well...he is only half paralyzed, so I guess that could be an honest mistake. See, Needlenoggin is a PARAplegic, which means his paralysis affects the lower half of his body. In HEMIplegia, the paralysis is on the right or left side, and is usually due to a stroke, not an accident.

Two days later, we realize that Needlenoggin has a UTI, a very serious condition in paraplegics, so we make another appointment with Dr. F in order to get an antibiotic. Well, first I tried to get the doc from Valley who wasn't a moron to prescribe one over the phone, but she wanted there to be a urinalysis first, so he'd get the right drug, and sent us back to Dr. F. Fine. We get in there on 10/16, and and he still didn't have Needlenoggin's records, and addressed him as a quadriplegic, while Needlenoggin was holding a clipboard in his left hand and writing with his right. That would signal, at least to me, that maybe all 4 of his limbs aren't paralyzed. So, Needlenoggin and I coined the phrase "Tri-plegic" for the imaginary diagnosis Dr. F gave him.

At this appointment, Dr. F had written a script for some random antibiotic and sent Needlenoggin out the door before I've even parked. He DID order a urinalysis, but wrote the Rx first.


Which brings me to that whole drama.

Without pre-authorization, MediCal will only fill 6 medications. Needlenoggin takes 8 all the time, so we had to pay for 2 drugs ($160 and up per drug per month) while they think about covering them. Then he gets this antibiotic, and it's #9, so we have to pay for that one, too. The state of California REALLY is trying to kill poor people.

Alright, lastly, when we called Highland to check on the time for his Neurosurgery appointment on 10/15, we were told he didn't have one. Then, we got yelled at by the MediCal processing board ("We won't cover him if he skips appointments") and Highland for missing it. Grrr. We were told that "around 10/22" we'd be called for an appointment in San Jose to get this brace off, but they forgot to put him on the schedule, so it looks like it can come off in January, when they can see him.

Oh, and there's still no help from IHSS, no word on his California State Disability Insurance, and no SSI. I've hired a nurse to come in part-time to help me out, but I'm having to pay the guy out of pocket, so he's only in for a couple of hours in the evening for the most medical-labor-intensive parts of the day, but I'm going a little bit nuts. I must get two dozen phone calls a day, and no one is calling with good or helpful news.

Oh so here's a nifty picture of the back of his neck:

That's from the spinal fusion and the exploratory drain surgeries in July and August. C'mon, it's a cool scar.

Little Monkey's Helmet!

So, the first one that was ordered was too large (looked like the poor kid had a colander on his head) but the second one is here, and it is wonderful. Here he is, grinning away (as usual):

A good thing, too, as he's started to crawl AND to cruise from person to person as if he's in any way allowed to be mobile. Seriously, the thought of him clanging that HUGE soft spot into anything sharp or hard, or of Rorysaurus catching him with a sharp elbow or toy...anyway, the helmet is wonderful.

He's also got FIVE teeth and is cutting a sixth, so he's been grumpy and tired and nursing ALL THE TIME, but he's still loving and cuddly, just very, very needy.

Monday, October 6, 2008

Update Part 2 (He's home!)

So, Thursday night the hospital bed had arrived, and we were expecting the Hoyer lift sometime on Friday. The bed is a piece of crap, as old as I am, and instead of two rails on each side (one at the top and one for the feet) there are only top rails. Oh, and they're old and badly attached, so I'm not sure they'll withstand all the tugging/pulling that Needlenoggin has to do to roll around in bed. We've fitted it with the anti-bedsore mattress cover Gloria provided for us, and got it all made up, waiting for him.

Friday morning my mother and I headed down to SCVMC early in the morning. The Hoyer arrived, and got set up, along with his monkey-butler (he'd asked for a telescoping chair and a monkey butler to serve him drinks. So far, no good on the chair, but here's Jojo):

We started on the training, which includes range-of-motion exercises, getting a wheelchair up and down a curb and medications (including shots, yay!), food schedules, etc. They were adamant about not giving him a power chair, so I decided to go buy the used one I'd seen an ad for. I thought we had this pretty under control, so Tuffy and I headed out to Monterey.

then, the medication crisis arose. Seriously, people, what a system. Seems that the medications, all 12 of them, were submitted to Walgreens under his Medi-Cal insurance. However, at one point Needlenoggin had filled a prescription at a Walgreens when he was still living with my parents, under their insurance, so Medi-Cal decided he had Blue Shield insurance, and that they didn't have to pay for anything. Umm...what? And, we learned that without a TAR request, Medi-Cal will only fill 6 prescriptions. Six. So the other six were going to have to be out-of pocket with one of them a $3500 a month medication, or he'd have to do without.

Which ones should he give up, though? the anti-spasm medication, his pain meds, the ones that treat his anxiety and depression? The ones treating his blood clots? Just one more HUGE problem with the under-funded healthcare system in the US, and how it is harming or killing poor people by making them choose which of their lifesaving medications they will get every month. Makes me so angry.

Anyway, so, after much discussion, we wheedled the meds down to 9 (some were redundant and some we could get over the counter (expensive, but still). We learn that Walgreens has to get a fax from Blue Shield explaining that no, he doesn't have coverage through them and hasn't for years, and then Medi-Cal will cover the 6 medications they want to. We have to apply for the others, and it will take 7-10 days. Needlenoggin will have to remain hospitalized for another week or more, and he finds this out on what is supposed to be his last night? That simply isn't going to work, and my father and I both said so. Eventually, he ended up paying for a week of the medications out-of-pocket (not cheap, either) so that Needlenoggin could go home while this whole mess got sorted out. We all struggled back to the lodgings for the night, and crashed.

Saturday morning dawned bright and EARLY and we all piled into the van, with BAGS of stuff, two wheelchairs (manual and electric) and a week's worth of expensive medications. We'd waited around an extra hour past what we'd planned waiting for someone to read his ultrasound and tell us if the clots in his legs were gone, but no one came. We told them to callus on Monday, loaded Rorysaurus into Needlenoggin's lap, and moved out.

We stopped for lunch at Fuddruckers (a place my family used to go a long time ago, when I was very little), had chili and burgers and fries, and had an enjoyable time.

Then, we drove the last few blocks home, and Needlenoggin rolled into his new home for the first time.

It was bittersweet, and I know this is going to be a rough transition for everyone, as we're working on getting the tables at the right height and navigating the corners of bedrooms and bathrooms. We're all very glad to have him home, though.

Saturday, October 4, 2008

Update Part 1 (through 10/2)

So, Needlenoggin's PT dropped him. She had him on a sliding board and the wheelchair wheel turned and he slid to the floor. She assisted him down to sit on his ankles, but he was in severe, severe pain for a few days, with more nerve pain also.

However, that did eventually pass, and we were told that the breaks that had been seen in both ankles on the Xray were, in fact, from his previous accident. So, they didn't actually break both ankles. like it was originally thought, but he's not really up to the task of transferring without his Hoyer lift yet, apparently. So, they decided to send us a hospital bed, a loaner manual wheelchair (his custom one won't be here until 2009) and the lift. Before the fall, they weren't sure about the Hoyer, and didn't want to send the hospital bed, either.

However, for long periods of time, moving around in a manual chair on carpet with a barely healed arm is too hard to do full-time yet, so I found and purchased a used power wheelchair for him. It has no bells or whistles, but it goes. I've been TRYING mightily to get a quote on a newer chair, one that actually fits him, & is smaller (so navigating around is easier), but so far I've sort of been ignored by the wheelchair companies. Oh well, this one will work for right now.

Anyway, so we canceled our 9/27 Saturday visit because we were all dealing with green phlem, and so I headed down at 7 am on Monday, 9/29 to meet up with my folks and do training, get his list of doctors and specialists and get his medications so he could go home.

What we discovered was that life had become unbearable at SCVMC. They had put him, full time, in a loaner manual chair. It was made for someone my size, doesn't tilt or let him weight shift like he needs to ("just do it with your arms...lift your whole weight up with your recently broken arm. Why is that hard?"). It also sits him differently, and requires much, much more effort to move, even on the tile floor of the hospital. How is that going to work with carpet at home?

Anyway, hey were supposed to do a full training of me on his care, and while the OT and PT did give me a whole lot ("here's how the hoer works, here's how to do range-of-motion exercises, etc) but the nurses sort of ignored me most of Monday on his medications and other medical care. The next day we scheduled a meeting with the care-people and found out that nothing had really been arranged. He had no medical supplies ordered, his bed and hoyer "should" be there by the time he got home, and they weren't thrilled with the idea of a temporary power chair. Um, tough? Deal? Didn't know how to explain that. Anyway, before I went home on Tuesday, we'd gotten everyone in agreement, and I got to observe some of the medical procedures. My folks did the evening routine, and I was chastized for not being there. this is exceptionally finny because they'd ignored me Monday night and had known what days I'd be available FOR A MONTH, so I think they're just upset that they didn't have their act together, yet again. Oh, and his caseworker, who'd always said his release date was October 1st, got angry and condescending about how she had told us that his date had been changed to October 8th, and why weren't any of us listening? I explained that a)I'd said from the beginning that I could only get him on a weekend and that b)she'd never mentioned this date change to anyone in our family. then she turned to Needlenoggin and said "Oh yes I did! I came in to your room and told you." When he disagreed, she basically called him a liar. This woman has done nothing but undermine his care from the start (she was the one who thought he'd be able to go home with no problems even with a spinal fluid leak).

So, the week wore on. Thursday night my folks and I decided that I should get more than one night of practice at the night-time routine, so Little Monkey and I piled into my father's car, and headed to SCVMC. I did the routine while Dodo (what Rory wants to call my father...he wants to be "Vader") watched my son. As we left, I got a really good photo of Needlenoggin and Little Monkey:

Cute, no? More update when I get a chance to write again.