Monday, December 29, 2008

Minor Christmas Miracle(s)

So, on Thanksgiving weekend, we did our first trip down to Southern California to see the family since the accident. Needlenoggin did really well, all things considered, and we arrived in SoCal so he could have dinner in the hotel with my folks:

There was ONE hotel in my folks' city with ONE roll-in shower, and my parents rented it for Needlenoggin, which meant that for the first time since July, he got to take a shower by himself (they hosed the patients off at SCVMC and he's been sponge bathing, but still). He told us he hadn't realized how dirty he'd been until he was finally clean. Oh, and the bench they'd installed (so you don't have to shower in your wheelchair) wasn't ACTUALLY attached to the wall, so he did have to shower in his wheelchair.

So, first shower.

Then we had a first birthday for Little Monkey/Glad you're alive party for Needlenoggin, and had awesome cake. Ninja themed? Yes it is.

Lots of friends who we haven't seen in ages (and who live far, far away) came to celebrate with us. More pictures are here and here.The best visitor for Needlenoggin though was his favorite high-school teacher. The guy came from a family celebration and sat and talked with Needlenoggin. Now, my brother has always been rather taciturn, and doesn't talk at great length, but since the accident we've had entire days that consist of two or three three-word sentences. So, to see him and Mr. P yukking it up was heart-warming, especially when he took an hour talking to us about the guy afterwards. If you're reading this, thank you so much for investing in my brother. You are a shining example of what teachers are supposed to be.

So. Fantastic teacher visit.

Anywho, the party went well. We also got some great progress in getting Needlenoggin into a car sans wheelchair. No, he can't do it by himself and yes, it involves multiple people and a lift, but hey, check him out:

So, riding in a real car. Cool.

Then we got home and had Little Monkey's check up at his surgeons' office. They poked him, squeezed him, measured him, and pronounced him healthy. "He may still need a corrective surgery or two to fix the outside of his skull, where it is all bumpy and dented, but that won't require any more cracking it open," we were told. "So, good. See you in six months."

Awesome. Minor neurosurgery, maybe, in a long time. Cool.

Oh, and we're figuring out our lift. We managed to get Needlenoggin into one of our recliners to watch a movie, which he said is way more comfortable than his wheelchairs. It's a half an hour process getting him in and out, but he REALLY seemed to enjoy it, so rock on.

Then, mid December, we took family Christmas pictures:

And made Christmas cards:

Later that week we went to the doctor's office for Needlenoggin to find that his doc had actually received the records and was a much, much nicer guy. Talked to me about Little Monkey, admitted that spinal cord injuries aren't his thing, but was willing to talk to us and get it all sorted out. Wrote correct Rxs.

Totally cool.

Then my folks arrived for Christmas. Minor miracle in and of itself, really.

They hung out with Needlenoggin on Christmas Eve and came back to our place for Christmas dinner. On Christmas morning, Needlenoggin was situated (in his awesome new Batman jammies) in the reciner nearest the tree. I went to go let the kids in (they were playing in our room), and came out to find that he'd (intentionally) slid down the the floor so he could open stockings with Rorysaurus. "I want to celebrate Christmas morning like a person," he said. "Take that thing," pointing to the wheelchair, "away."

It is a huge workout on his center, since he doesn't have complete control over that area, but how cool is that? (Getting him back up is less fun, but whatever). He's even found he can snuggle Dingo better from on the ground.

So, sitting. Score.

He's also trying to use his manual wheelchair more and more as his once-broken wrist gets stronger. We're still waiting on his permanent wheelchair to come (he's in an ill-fitting loaner), which we hope will get him out and about more. Still no social services (they said maybe in April), but we've been blessed to have a wonderful dog trainer volunteer her time to work with Dingo and a volunteer dog-walker come several times a week as well.

Yay is. C'mon 2009!

Wednesday, December 3, 2008

Neck-brace and PT for Needlenoggin

Well, after two scans (a Cat Scan on 11/24 and an Xray on 11/26), Needlenoggin was finally cleared to live his life without a neck-brace! Yeehaw! This is great news because now he can look around from side to side and up and down, something he hasn't really been able to do since the fall. (We took it off for photos since he hated the look of it so much, but he had to wear it all the time to make sure he didn't snap his top two vertebra). Ick.

If you remember, the brace looked like this:

Now, he looks like this:

Also on the 26th, we went to his physical therapist (all the way out in SF) and she tried to get him into a standing frame. it didn't quite work (since the harness they had is awful and Needlenoggin isn't quite flexible enough in his legs to stand). She bucked him in here:

and was able to get him up this high:

He can't weight-bear (hence the uncomfy look on his face) but being upright is so good for his spine and internal organs. e was sore for a good long while afterwards, though.

Oh, and we managed to get him into some hot water...literally. His therapists have all recommended that he get into a warm therapy pool to ease his spasms and take some weight off of his fragile skin. We were finally able to find such a pool and a lift to get him in and out, and while not floating away was a lot of work, he loved it. It was the first time he'd been submerged in water since the accident (no baths or pool therapy until this point).

Broken Hearts

Alright, the title may be a little melodramatic, but I was very shocked at Rorysaurus and Little Monkey's checkup the other week.

In case you didn't know, or remember, Little Monkey has a heart defect (he did have two, but one went away all on its own). Instead of looking like this:

Little Monkey's Aortic Valve looks like this:

It's a minor defect as far as heart defects go, and while it probably will require surgery, it shouldn't be an issue until he's in his forties.

Well, when we went to the kids' appointment, my WONDERFUL pediatrician checked Rorysaurus' ears and heart, then checked Little Monkey's head, then listened to Rorysaurus' heart, then checked her reflexes, then had Rorysaurus lay down so she could hear her heart... You see where this is going, right? So, I asked what was up, and (after getting the opinion of the other doc in the office) she told me Rorysaurus has a benign systolic heart murmur, known as a Still's Murmur. Not a real problem, just something we need to be aware of for dental surgery because of an elevated risk of infective endocarditis (where bacteria enters the bloodstream through dental procedure and infects and kills a heart valve. It actually happened to Dh's cousin's wife (hereby dubbed Music Mama).

By the way, if you have any extra prayers to spare, please keep Music Mama in your prayers. She had a valve replaced a few years ago due to the endocarditis, but it is failing now, and she's in her sixth month of pregnancy. Her docs figure it will be between 3 days post-partum and a few years before the valve needs replacing, but if y'all want to pray the need is delayed as long as possible, that would be great.

Tuesday, November 11, 2008

More Doctors for Needlenoggin

Always more doctors. :)

On 10/27 I took Needlenoggin to an appointment all the way back down at SCVMC, hoping to get the brace off of him or get him some physical therapy or something. I dropped him off at the appointment, and went the couple of blocks back to the rehab center to order his medical records.

When I got back to his doctor, I found out what probably saddens me the most about his injury. Needlenoggin's memory is gone. Sometimes it is nearly normal, but most of the time he can't remember instructions, directions, a few things on a list, the day of the week, who his doctors are or when he came home from the hospital. He'd half-remembered info to the doctor, and between the staff guessing and the power of suggestion, they'd gotten almost no factual information. I had to go in, correct them, and get referrals so he could get doctors that weren't affiliated with Dr. F.

I DID get to see his discharge paperwork, by the way, and I think I've found out why they didn't want me to have the records. The discharge form says he can do stairs with a lot of assistance, and that he is mentally perfect and has a wonderful memory. Either lies or utter incompetence.

Some cool things, though:

This is his broken wrist.

Here you can see the injury to his vertebrae.

Here you can see the pieces that broke off.

Here's the metal rods in him from his fusion.

I did get him to a PT appointment over at UCSF, and the lady was wonderful. We're now playing phone-tag with the real PT clinic to try and get him an appointment, and trying to get him into a UCSF General Practitioner. Looks like we need a UCSF referral for that (if any of you work there, we could use it!), so it is a process.

Monday, November 10, 2008


Meet the newest member of my family.

After seeing Needlenoggin break down whenever he was around dogs or saw one in a commercial, or thought about the dog he'd had back at my folks' house, we all decided it was time to start looking for a dog. We checked at the pound, but found nothing there but older dogs, aggressive dogs, pit-bulls and a Siberian Husky puppy. So, we searched craigslist, and applied at some rescues.

A thing I don't get about dog rescues. These animals were going to be put to death, are in cages and cost a LOT to care for. A family wants to bring them home, and I understand wanting to ensure that the dog will have a good life, but some of the requirements are unbelievable. We were turned down by 5 rescues.
1) They don't give dogs to families with kids.
2) We don't have a dedicated private yard and do have kids.
3) No other dogs and we don't make enough (?!?)
4) Too many people in the home, no private yard
5) No kids, dogs don't like wheelchairs, no yard.

Well, yes, an adults-only home with a large, fenced yard, lots of disposable income and someone at home all day (we met that one!) with other well-behaved dogs would be ideal. However, isn't a stable, loving home better than a shelter?

Then we found Tony La Russa's Animal Rescue Foundation, or ARF. Arf had LOTS of dogs, some rated for living with kids, some not, some that needed yards, some that didn't, and the sizes ranged from 4 lbs to 60 lbs. Awesome. (yes, I'm totally shilling for them. They are a GREAT organization, the dogs come microchipped, fixed and you get a free 7 week obedience training class when you adopt. If you're in the Bay and want a pet (they do cats, too), look them up.)

Anyway, we looked at a few Lab mixes, some of whom really seemed to do well with the kids, but a lot of them were afraid of the wheelchair. Anytime Needlenoggin would move, the dogs would panic and run from him. It was heartbreaking. Then we discovered "Beatrice" the Shepherd mix. She didn't mind the wheelchair at all, is (pretty much) housebroken and was an angel with the kids.

Here's the photos they took at ARF:

Doesn't Needlenoggin look happy? :) So, Beatrice came home, and after an hour or two, had adopted both Needlenoggin and Little Monkey. Needlenoggin is her friend, and Little Monkey is her puppy. She will lick tears (or food) off of his face, cuddles up with him on the floor and will let him pull on her skin and fur to balance and cruise around the house. Being the kind of people we are, we decided any dog that looks like that and loves to lick small children so much should be named "Dingo." And since she's just the silliest dog ever, her full name is "Dingo-Berry." I know, I know, there's something wrong with us. I don't care, Needlenoggin loves her.

And, she loves the rest of us, too:

She's registered with the United States Service Dog Registry as a service dog in training, and is learning to pick up objects Needlenoggin has dropped, hold doors open for him and pull his manual wheelchair when he gets tired. She even went out in Public to the Monterey Bay Aquarium the other weekend in her service-dog-in-training vest.

All in all, she's melding in quite well. She's a little protective of Needlenoggin and Little Monkey (she'll sometimes growl at strangers who approach) and she's made a few messes (easily cleaned up, but still) on the carpet in the apartment, but otherwise, she's doing well. "Sit" and "Lay Down" and "Paws U[" (putting her paws in Needlenoggin's lap and standing up so he can pet her) she has down, and she's working on "Up" (onto his bed), "Off" and my favorite, "Baby" (where she goes to lick Little Monkey). She's already a part of the family (after 3 weeks) and even joined in the Halloween fun:

Anyway, thought I'd introduce y'all.

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.

Wednesday, September 24, 2008

T-1 ASIA C (and other things)

So, Needlenoggin has been upgraded to a T-1 ASIA C (he was ASIA B before hand). I've spoken with his neurologists and neurosurgeons, and finally found SCI Info Pages as a great website to explain all of this nonsense. What follows is a short explanation of what this means, in layman's terms.

There are 4 parts to your spinal cord. The part that attaches to your neck are the Cervical vertebra, the ones from your shoulders to your hips are the Thorasic. Then there are five Lumbar and the fused Sacrum at the end of the cord (your tailbone). These are abbreviated C, T, L, and S.

According to Dr Wise Young at Rutgers, "In general, neurologists define the level of injury as the first spinal segmental level that shows abnormal neurological loss. Thus, for example, if a person has loss of biceps, the motor level of the injury is often said to be C4. In contrast, physiatrists or rehabilitation doctors tend to define level of injury as the lowest spinal segmental level that is normal. Thus, if a patient has normal C3 sensations and absent C4 sensation, a physiatrist would say the sensory level is C3."

Needlenoggin is a T-1 classification with impairment at C-8 (some tingling and numbness, but control of the muscles in his hand). The ASIA is just the name of the organization that created the scale of injury, the American Spinal Injury Association. Then we get to the numbering, which is very confusing. Here's the RoundPeg version:

A= Complete: No feeling or motor control below the injury level.

B= Incomplete: Feeling but not motor control below the injury level. (According to Dr. Young, a rather rare classification). this is where Needlenoggin was before.

C= Incomplete: Some motor function is preserved below the injury level, but less than half of the muscles below the injury are at grade 3 (able to go through a full range of motion against gravity, but not resistance). This is Needlenoggin's current classification).

D= Incomplete: More than half of the muscles below the injury are graded 3 or above.

E= What Spinal Cord Injury?

Ta-da! What would you all do without me? Anyway, so that's the good news. the bad news is that no one knows when he's coming home (still!) because his Physical Therapist wants to keep him longer now that he'd get something out of it (can actually do rehab now that his cast is off) but the center still wants him gone. Of course, Needlenoggin wants to be home, himself, but knows that the in-house rehab is best for him. We'll see.

Now, the pictures you're all waiting for:

The Oakland Fire guys sent Rorysaurus a firefighter outfit, and some toys. She now thinks that all firefighters do is bring toys and "look at you when you hurt your head." So, of course, she brought the biggest toy of them all to Needlenoggin, and checked on his head.

I don't have a photo yet of her and "PJ", but she named one of the monkeys sent to her after the firefighter who cared for her after the accident. Very cute.

Oh, and the above photo is of a piece of her artwork. I didn't touch a single pen on this (although I did prompt things like "does he need another arm?" and when she asked where his chair went, said "draw circles here"). This is, to quote her, Rorysaurus and Needlenoggin going to the park. They are holding hands." Too sweet.

This morning she woke up with a 99.5 fever, so she stayed home today and vegged on Blue's Clues.

Saturday, September 20, 2008

Needlenoggin update (with video)

Well, his medical drama continues. I saw Needlenoggin on September 7th before Little Monkey's surgery, but after his horrible experience with the terrible night-nurse, I got my mother to call every shift to talk to each and every nurse assigned to him at SCVMC. We made sure he got his medications on time, and everyone told us he was doing splendiferously.

Turns out, that wasn't the case. The catheter that was misplaced continued to be uncomfortable, and began to bleed. This triggered some worry, but not really enough to do anything. Then, on Monday, the 15th, he was delirious and difficult to understand on the phone. Tuesday, he called incredibly confused and in tears. They'd not gotten him all him medication again, and he had a fever of 103. They had put him in his chair at some point, and he was so dizzy and uncomfortable that he went rolling down the aisle looking for a doctor. A nurse, who we'll call "Mess", told him he did not need to see a doctor and was fine. When, during their conversation, he nodded off because he had a fevergot in his face and screamed at him, and then forced him back into his room. Then, he was put back in bed and not medicated or turned, and was ignored as he called for the blankets to be taken off of him, or for ice packs. That's when he'd managed to call my mother.

Needless to say, I was so mad I could spit. He told us that eventually, a sweet nurse who wasn't even assigned to him, Jackie, came into his room and put ice packs on his legs and a cool rag on his forehead, and held his hand while his fever came down a little. We called her to let her know she was an angel and, at his request, brought her a tin of cookies. She was compassionate and kind and good, and provided the kind of care that everyone hopes their loved ones are receiving in the hospital.

Anyway, at that point they decided to find out what had been causing that whole nearly-brain-poaching fever, and it turns out, it seems to be a kidney infection. You know, the kind of thing caused by a misplaced catheter and orders to have a very, very, very low fluid intake? Grrr.

We got there on Tuesday afternoon to discover that, despite orders that his back-staples come out on the 10th and his cast come off on the 12th, it was now the 16th, and neither had been done. His attending physician came in and let us know they were going to do a CT scan to check for infection. "But," Needlenoggin inquired, "didn't they just do a scan two hours ago?" Of course they had, but the orders for the neck-to-hip scan had been ignored and they'd only scanned his lungs. Irritated, Needlenoggin asked about the cast again, and was assured it was coming off right then. He rolled his eyes, and the doctor seemed surprised he didn't believe her. "I've been promised that this thing was coming off for 6 days," he told her. She then promised that she'd get someone to wheel him in to the cast guy before his CT, in ten minutes or so. After 4 or 5 minutes, my mother and I went out to wrangle the kids so they could ready my brother for his trip down. We were told to come back in an hour or so.

An hour later, I came back in and said, "Hey, you're back!" He turned to face me. "Back?! I haven't gone anywhere!" We went to go find nurses, and they said they'd been waiting for the cast guy to come up and get Needlenoggin (not Standard Operating Procedure). So they called down, and the guy, who'd been waiting for Needlenoggin to be wheeled down to him for over two hours, and he was on his way out for the night to go to dinner. "He can't wait just five minutes?" Needlenoggin implored. My mother talked to the guy and he agreed to cut the thing off. "You're wonderful," she told him. "Yeah, well, tell my wife that. I'm late for our dinner date and she's going to be angry." (We bought his wife flowers and a card the next day).

We got ready to leave that Tuesday night with plans for my mom to head back on Wednesday morning, stay the night, and for us to come get her on Thursday.

"Wait," he said. "Before you go, I have a trick to show you. It is a LOT of work and will tire me out." Here's the trick:

Can you believe it? He says that he's still in loads of pain, and he thinks he's just learned to trigger a spasm to move the leg, but "moving is moving, right?" I'm so pleased for him! (I hate to note this, but this ability to focus all of his strength, to the point of exhaustion, so that for just a few minutes he can force small, uncontrolled movements of his legs, does not make Needlenoggin UN-paralyzed. His prognosis is still grim, and his chances of EVER getting out of a wheelchair, short of this robotic get up:

is very, very, very shoddy. I feel like I have to mention this as two people emailed me to say how happy they are that he's now all better. He isn't. The best part of this news, really, is that it means all the nerves aren't shot, and that he may regain bowel and baldder control sometime in the future.)

The next day we sent my mom down on BART to see him, and she took down the flowers and cookies and candy for the cast guy's wife, Jackie, and the other nurses who aren't hurting him. While she was there on Wednesday, they took out his back staples and started him on antibiotics.

Thursday night, we all came in, and Needlenoggin got to see Rorysaurus:

Made both their days. Rorysaurus also made friends with another patient's girlfriend, and when she'd wander off, we'd find my daughter snuggled up in this young lady's lap. A very sweet family, that one. Little Monkey babbled happily at his uncle, who was mildly disconcerted. "It interacts now?" He asked of Little Monkey. "See what happens when I go away?"

So, now he's on oral antibiotics and, supposedly, his Medi-Cal application has been approved (I'll believe it when I see it, though). As it stands, he should be back at the end of the first week of October, if all of his medications, equipment and paperwork are done AND he's been assigned to a new GP and spinal rehab outpatient center.

Julian is home!

After Karen and her lovely daughter came to visit in the ICU, Little Monkeystarted acting like he was in more and more pain. For about half the time he was awakem he was smiley and interactive, and had long conversations with "Fire Bear" (one of the toys brought to us by the Oakland fire department).

During these periods, we managed to bring Rorysaurus back in to see him, and she had a great time visiting in her surgeon's scrubs:

Little Monkey was glad to see his sister and even batted keys for his Papa:

Poor little guy then got very, very fussy, and so I held him until his drugs kicked back in.

Tuffy took Rorysaurus out to the little kids' play area and let her run around before heading home. Seriously, is this a GREAT hospital or what?

I had to stay with my monkey baby because he wasn't eating from the bottle anymore, so after a few hours napping while Godmom and/or Tuffy watched at bedside, I had to be with the cute little guy. He was waking every two hours, refusing a bottle, craving his Morphine, and having a very rough time. The nurses, fantastic and wonderful women that they were, helped me figure out why he was in more pain than the last time. Turns out, instead of Morphine and Tylenol with Codeine, he'd just been getting regular infant Tylenol. Orders were written for Ty-Co, and upon reciving his first does, Little Monkey tore out his IV (which was only being used for the morphine at that point anyway). The nurses and I decided not to put the IV back in right away and to see if the Ty-Co worked for his pain, in which case he'd be done with his IV, and would only have his O2 monitor and his heart stickies on. The oral meds worked, and he was able to avoid another needle stick, even at his most swollen:

Almost immediately after the oral meds had started, they moved us to the floor (on Friday morning). He skipped the annex of the ICU this time (the quiet side) and went straight up a whole day earlier. Then, up there, he made lots and lots of friends with student nurses, including this guy who said no one would ever believe he'd been holding a baby:

Friday night, the plastic surgeon came by, checked the baby out, and said he could go home if he wanted. Our pediatrician agreed, and so the neurosurgeon was apged to sign the orders. Eventually, the only thing holding us up was the Rx for his pain meds, which we got and rushed home. The bandages came off once we were home, as per instructions:

The scar looks FANTASTIC, even just a few days post-op, and it is easily hidden by a hat:

Not that it matters when you're looking at his cute little face:

The plan had been to build him "man-brow" but since they worked only on the back of his head, his little face has been left alone. However, a good third of his head has no skull in it, so he's got a soft-spot the size of my hand (fingers included). There may be more surgery for the little dude, but this time around, he did fantastically, and he isn't getting helmeted (at least not as of now).

He's back to his cheery little self, and played quietly in his exersaucer and with Rorysaurus Godmother while we moved little bits of stuff over on the weekend to the new home:

A special thanks to Godmom (as well as her son and daughter-in-law) who came to lift heavy things, clean and cook for us while we were in the hospital.