Thursday, May 28, 2009

"Happy" Jetting, Indeed

So, Needlenoggin had a seat on a 12:30 flight out of our local airport to go to SoCal yesterday. He was going to go visit my parents for a few days and head out to the Abilities Expo. It was going to be a nice break for everyone involved.

We printed out his boarding pass in the morning, and couldn't indicate that he had a bag to check and a wheelchair to gate-check on the form, so I called. Having cleared that up, I was told he'd only have to ask for help getting his bag to the bag drop and getting through security. He's flown once now in the chair, and we thought we had this down. So, the boarding pass says "Boarding begins at noon." Cool.

We drove to the airport, and the area near the Jet Blue terminal was under construction, so we head to drive 1/3 the length of the airport to get to a curb. Fine. Then, we had to wait for the disabled drop-off spot as a limo and a MILITARY vehicle (neither discharging disabled passengers or with placards, just to make it clear), unloaded in the spot first. Fine. Once we got in the spot, we got Needlenoggin out and into his wheelchair, and realized that I couldn't park (loading zone, dontcha know?), but that he had nearly a block to travel to get his bag to the Jet Blue counter. It was now noon. Hmmm.

We asked a few of the security people what to do, and TWO of them promised to run to Jet Blue and get a skycap. Then they wandered off. So, I attached his bag to the back of his wheelchair with a bungie cord, gave him a hug, and he lugged his bag and carryon all the way to the counter. He handed in his bag at 12:09, and explained that he'd had to pull it all the way here, which hadn't been easy, and that his plane was leaving at 12:30. There wasn't a huge long security line, and the people at the counter told him (an exhausted, frustrated kid in a wheelchair) to "hurry."

He did. He got through the security check-points, and then ALL THE WAY to his gate by 12:22. Not bad, considering he isn't a racer, and how much work pushing is on carpet. And you know what? They'd left without him. The plane had left at 12:20, even though he'd arrived and turned in his luggage and should have had an escort (we were promised one the last time he flew Jet Blue). So, they'd known he was on his way, had taken his luggage and put it onboard and LEFT EARLY...

Let me make this clear...had someone been able/willing to help him with his bags (or had there been a way to drop him off next to JetBlue), he'd have been fine. Had they helped him through security (a longer process in a wheelchair that involves getting wanded), he'd have been fine. If someone had been dispatched to help him get to his gate across the terminal quicker, he'd have been fine. If the plane had left at its designated time, or even only 5 minutes early, he'd have been fine. IF THE CHECK-IN PEOPLE HAD JUST CALLED THE GATE AND LET THEM KNOW HE WAS COMING, he'd have been fine. But they did none of this.

Ad what was their solution? "The next flight with open seats is at 5pm. I'd suggest you hop in your car and drive to San Jose airport (an hour from us), and get on the 3:45 flight there." No apologies. When he explained that he had no car and couldn't drive (and that he wasn't good with any kind of hopping, really), he was told to make up his mind about whether he was getting on the 5pm flight or not.

Now, I was at home, revising my LAST paper of the semester that needed to be submitted by 2. He calls, and we get into this whirlwind, and realize that by the time I get done, get him, get him home and calmed down, it'll be time to go back to the airport, which he isn't willing to do. He wants to take a cab home and cancel his trip altogether. I want them to put him on the next flight.

Finally, my parents get on the phone with the head person at the airport for Jet Blue, who offers to buy Needlenoggin lunch while he waits for 5 hours at the airport. He consents, plays his DS for five hours, and gets on the plane to SoCal.

I'm FURIOUS. This is no way to treat any passenger, much less a disabled one who got to the plane on time AND requested assistance. If you'd like to help me vent my frustrations, here is the contact #:

JetBlue Corporate: 1800-Jet-Blue
The "Report a Problem" web-page is here

Or, if you want to send it the old-fashioned way:

Jet BlueCorporate Headquarters
118-29 Queens Blvd.
Forest Hills, NY 11375


Jet Blue
c/o Oakland Airport
1 Airport Drive
Oakland, CA 94621

They ask for some basic flight info, so:
Confirmation # E511BQ
Out of Oakland
To Long Beach
Yesterday at 12:30 (!!!)

In their Bill of Rights it says (in the section on over-booking) that passengers "who are involuntarily denied boarding shall receive $1,000." I think his flight home should at least be free. ::grump::

Wednesday, May 20, 2009

Morons, MediCal and Medicine

"Hi, we have a question about a TAR request for medication. We don't know who my brother's worker is, though."
"Sure, here's the county office number."
"No, we've called there, and they've told us that since he is on SSI, he no longer has a county worker. I'm trying to figure out who is handling his TARs now."
"His worker would be based out of the county office."
"But he doesn't have a worker..."
"That's not what you said!"
"Sorry, let me try and clarify. He doesn't have a worker because..."
"That is NOT what you said when you called!" (starting to sound riled up and panicked). "You said you didn't know who his worker was, not that he didn't have one!"

::click:: I just couldn't take anymore stupid. It was leeching into my brain.

Eventually, we got the TAR number, found out the meds had been approved on 5/5, and called the pharmacy, only to be told that the meds in question were discontinued. I'd just ordered them (with my money) from the manufacturer earlier that day. When I tried to argue, she said, "Our wholesaler says they no longer exist, so they no longer exist. You can't have them."

Now, Walgreens had been willing to order this med last month when it was self-pay, but as soon as it gets approved by MediCal, who pays less than I would, we can't have it? Fishy. I'll be getting the manufacturer and Walgreens on a conference call today.

On the plus side, MediCal SEEMS to have approved Needlenoggin's wheelchair, which would be fantastic. They didn't approve the depth of the seat, so I'm afraid it'll get kicked back to processing (again)...but it would be so nice to get him his official wheelchair before the anniversary of the accident!

Other Friends and Family

First, the bad:

Needlenoggin's attendant and friend, Miss Manhattan:

had her apartment in Oakland (far, far away from here) broken in to. The thieves ate food out of her fridge (?) and stole her laptop, which had her 20 page RN final on it. Yeah, sucks.


My Godfather, Tuffy's uncle, lives up here in NorCal. He was home, doing some minor home improvements that include hauling junk to the dump, and was trying to load heavy, wheeled items into a pickup by himself. Long story short, he injured his right shoulder, broke his left arm, banged up his head and shattered his right knee. It'll require surgery.

His wife was at work, his phone was in the truck, and he obviously wasn't going to walk for help. Luckily, a neighbor heard him calling, and got the fire department over. Now he's home recuperating with company from a friend, but he's having to hop in a walker and swing from a rope wound through the rafters, and he looks mightily uncomfortable.

Worse, the poor guy, who loves to garden and work in his vineyard, can't get out of the living room/kitchen area. But, we still have Needlenoggin's powerchair! I think we're taking it over this weekend to see if it'll help put a smile on the guy's face. it should be able to go out on dirt and gravel, and allow him to travel over the grass and get out in his backyard. I hope this is a good fit.

In good news:

Congrats to my cousin and two of Tuffy's siblings who are graduating from college, as well as my fellow Student Parents from Cal Berkeley. My Godmother's son graduates this month and gets his Lieutenant's commission in the army, and his wife graduates with honors from the same school.


Congrats to Lisa (she lived below us pre-accident) who just got a cool new job. Awesome. Two of our other pre-accident roomies are having a baby this summer as well. Yay!


Congrats to an "internet friend" who won her primary race for public office!


Thursday, May 14, 2009

Poor Little Monkey

My poor little son. He fell this week (of course, the week that Tuffy is gone for work) and split his lip, and then is breaking two molars as well. He's had a 101/102 fever off and on all week, and cries for HOURS, nonstope, regardless of Tylenol, benadryl, food, milk, what have you.

Later this month, he goes in for his semi-annual echocardiogram to check on his little heart problem. And then, June is coming up.

Little Monkey has his 18-month check-up in June (shots!), but that's no more of a big deal than all little kids go through. However, he has a big cranio-facial panel (including checking out his teeth, which may be a little bit off) in early June. I was all gung-ho for this to be another easy, "he's fine!" appointment. However, look what we have here (ignore the totally rad hair he has going).

Or there's this one, with him and my mom:

There are actually bumps on both sides of his forehead, but that one on his right (the left side of the photos) makes it pretty prominent. ::sigh::

Tuesday, May 5, 2009


Wow, a couple of good-news posts in a row!

When one of my mother's friends heard about Needlenoggin and Rorysaurus' accident, she felt compelled to do something. So L. N. spearheaded a movement to get blankets made for the two of them. She wanted to make a twin-size duvet for Needlenoggin and a kid-blanket for Rorysaurus, and asked for ideas.

For my daughter, of course, it was easy: Batman. L. N. was surprised, but pleased, and told us she had just the fabric for it. For Needlenoggin, we took a sheet and laid it out on the floor, and then had Rorysaurus dip her feet in white pain and run all over it. We figured he'd like that best of all.

Well, in April, the blankets arrived.

We sat Rorysaurus down in her Batman chair, with her Batman doll and her Batman slippers, next to her Batman castle (yes, there's a theme). We then blindfolded her, and tossed the blanket on her lap:

Then she opened her eyes. Oh, was she pleased! The Batman on her blankie is almost as big as she is, and it is awesome:

And look at the flame-trim! Too cool.

Then it was Needlenoggin's turn. First, we has her sign it (the artwork was hers, after all):

Then we drug it over to Needlenoggin and tossed it on him in bed. He's a fan, but wishes I and my camera would go away. So, instead of seeing my brother, you get a picture of my Little Monkey on the blanket, after we've washed the dog-footprints off of it:

Each blanket, by the way, has a small patch attached of Psalm 9:10:

I'd have gone with Isaiah 40:31, personally:
"They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint."
I want him walking and running (and not fainting would be good, too).

Thank you.

Friday, May 1, 2009

Introduction to WellSphere

As Mostly Medical Misadventures & Mishaps was just added to WellSphere (a health community full of doctors, yoga masters, and caregivers), I thought it would be appropriate to introduce myself a bit to the new readers.

I'm Round Peg Inna Square Hole, or Round Peg for short. I'm 25 years old, married to my high-school sweetheart Tuffy, and we have two children. Rorysaurus is three and a half years old, and Little Monkey is nearly one and a half. We live together in the SF Bay with my younger brother, Needlenoggin, and I'm a full-time graduate student working toward my M. A. in teaching. I plan to be ready to teach middle school when Little Monkey is ready to head off to kindergarten.

Mostly, however, I am a full-time caregiver. It is not what I had planned to be, and not what anyone whose ever met me would assume I'd become, but it is what I do twenty-four hours a day, none-the-less. No one is more shocked by it than me.

My first care-giving job was when my grandfather died. My grandmother was legally blind and unable to take care of herself, and so I moved into her home in 2000 during my senior year of high school in order to cook meals for her and keep her company. I was happy to spend the time with her, and got to know her wonderfully well, listening to her stories of the Depression, World War II and my mothers' childhood. I'd have stayed there, but I needed to go off to college, so my grandmother moved in with my parents and I headed off to school.

I married, earned a scholarship to UC Berkeley and moved to the Bay. My daughter was born in 2005, and she was a colicky screamer. She had acid reflux and screamed twelve hours a day, which wasn't what I'd expected, and she required a lot of care.

We did a semester with no sleep, she came to class with me, and we got through it.

On Mothers' Day in 2007, I graduated with my degree in English.

I was 3 months pregnant with Little Monkey, and was ready to take a semester off. We moved into a nice apartment near Lake Merritt in Oakland, and settled in for what was supposed to be the easiest year of my life.

When Little Monkey was born in December, he was diagnosed with Craniosynostois and a heart defect.

His story is here if you want to read about it. He required a craniectomy, and had a five-hour surgery at seven weeks of age.

My life sort of revolved around the little guy until his incision healed up and the swelling went down, and then I enrolled in my graduate program. He'd recovered wonderfully, and our only worry was that he'd need another surgery somewhere down the line, and he was such a happy baby that caring for him in his injured state wasn't very different than caring for a healthy infant, except the emotional drain that I felt due to the constant worry about him.

In July, two weeks after he'd been given a second surgery date, the exterior stairs of our apartment collapsed, dropping Rorysaurus and Needlenoggin three stories to the pavement below. He broke his back in several places and requires a 24 hour caretaker. Because of state budget problems, there was no funding for anything except a nursing home for him, and it took 6 months to get him to a physical therapy appointment. He came home with Tuffy, Rorysaurus, Little Monkey and I, and I started doing his stretches, exercises, medication regimen and the never-ending battle with the State to get him a wheelchair (none yet).

Read our original posts about this here. When he came home from the hospital, he needed help with everything, from bathing and weight shifts for his skin, to other medical procedures. Getting him through the day and getting all his medications into him every day became my full-time job, and it is round the clock. His mental and emotional state was fractured when he fell, and his memory has disintegrated, so he'd wake at odd hours, disoriented, and what sleep I was getting with a PTSD toddler and an infant disappeared.

And then, in September, Little Monkey had his second surgery. It was shorter, and he came out of it fine.

I'm still my brother's care-giver, and I take care of my two little kids. Rorysaur is nearly four and goes to Preschool during the week, but Little Monkey is my constant companion, coming to doctors' appointments and to the Social Services office multiple times a week. Tuffy deserves credit, and a lot of it, for being the one level head in our home, as Needlenoggin is still recovering and I'm constantly frazzled, exhausted and short-tempered. He's been my rock throughout this.

So, there's an introduction. Please, use the comments section to leave advice, tips, questions or whatever. Fell free to catch up on the previous posts, as well. God bless.