Trust

Especially when, as in Needlenoggin's case, it seems like all the professionals he runs into are out to get him (Medi-Cal and the Rehab center, specifically). However, it occurred to me over the last few days, that if you're looking for a rule of thumb on the "who to trust" question, I may have one:

Trust the people that saved your life

In this case I mean Dr. K- from the previous post (as well as her superior, Dr. F-) and the Oakland Firefighters.

Dr. K met us, during clinic hours, to sign paperwork in order to get Needlenoggin some in-home-care, and managed to get Needlenoggin signed up for a real physical therapy appointment in a month! This AFTER saving him in that whole "spinal surgery" thing.

Then, the Oakland Firefighters' Random Acts Organization. Oh guys, you have NO IDEA how much you mean to us. As if these men hadn't become our heroes when they came to Needlenoggin's fall, or when they brought my children toys, or when they named Needlenoggin a citizen hero, or when they managed to get him some medical equipment. As if these men, and their fearless leader Ms. C-, hadn't made Needlenoggin's whole year by inviting him to be involved in their dinner-dance-fundraiser as a guest-of-honor. No, thye go above and beyond even that. Turns out that while we've been searching, in vain, for someone, anyone, to help with Needlenoggin's recovery, his story has spread, and they have a connection to chiropractic care. This means that Needlenoggin will be able to get some evaluation and some exercise and therapy ideas from highly trained professionals (instead of, you know, me), from people who know his situation.

AND, to top it all off, Needlenoggin was able to meet, and receive treatment from, the founder of one of the top Orthopedic Massage and Manual Therapy methods in the nation. He was a practice patient at a clinic here in the bay:


While Little Monkey made friends with the therapists in attendance:


Thank you everyone who is working on making Needlenoggin better!

"That's impossible"

We hear that a lot in this house. Rorysaurus' colic was impossible, her flesh-eating bacteria too. Little Monkey's whole skull-adventure was sort of beyond belief as well, and then this whole situation with Needlenoggin.

Thing is, without trying to sound peppy or optimistic, I've begun to believe that nothing is particularly impossible, and that includes anything said by medical professionals. This includes the two rehab centers who have told me they won't provide false hope by giving me exercises to do since it is "impossible" for him to continue to recover at this point after the injury. (I've taken to just telling them he's only 3 months, instead of 9, past injury so that they'll give me more information).

However, yesterday, for the first time, someone used the word "impossible" in a way I could have only dreamed. Needlenoggin went in to the hospital for a Neurosurgery check up with one of his favorite people on earth (and one of his two favorite white-coats, ever), Dr. K-. The appointment was at 8 am, which means arriving at 7 something. He was up, out of bed and doing his hair at six something, all by himself. When he arrived at the hospital, he was carrying along chocolate, flowers and a card for Dr. K- as well as Dr. R-, (the two women he credits with saving his life after the accident and allowing him to recover as well as he has) with the intent of asking them to come with him to his firefighters' charity dinner thing. Dr. R- wasn't in, but Dr. K-, his neurosurgeon, was ecstatic to see him.

And THEN he showed her how well his legs can move. She started to cry a little bit. Then, after composing herself a little, she tested his strength, which was way beyond what she'd expected. Then she heard he was off of one of his terribly side-effect-ridden pain medications. She was in shock. Happy, happy shock.

She called me when they were done, and ordered a weaning off of another terrible medication (yay!), and then told me how impossible this was. She'd done his 8 hour spinal fusion surgery. She'd seen him less than 24 hours after the fall. She knew what his prognosis was...they weren't sure he was ever going to regain the use of his hands or fingers, and knew he wouldn't be able to sit up on his own."I'm the one who told you he'd never walk again," she said, "And I've never seen anything like this. His legs SHOULD NOT be moving."

"This is AMAZING," she said, over and over again, and said that she's not sure, now, what his recovery ceiling is. He's passed what she expected by SO much, who knows?

And then it was said. "If he continues like this, he may walk." Oh, the tears that brought me.

She happily accepted his invite to the dinner, and then told him she'd make sure when he arrived today for his ER follow-up that Dr. R- would be available to see him, and would take him to the ICU so his nurses could say hi as well. She also wants his MediCal worker's name and number to try and get him some PT/OT. He came home bubbling over, did a bunch of exercise, and went to bed early so he'd be rested to see them all again tomorrow.

So, today, we arrived a little bit early, and got a hug from Dr. K-, who then escorted us into the ICU. Needlenoggin met with almost all of the staff who kept him alive in the ICU (although he doesn't remember any of them). Then he was able to gift Dr. R- with her flowers/card/chocolate. She's supposed to be in a conference out-of-state that week, but she's going to try to fly back for that night so she can come. The whole ICU was astounded.

And everyone decided a supported-stand photo would be better than a wheelchair photo, so:


Let's recount the "impossible" here, shall we?

* Needlenoggin goes to a 7:45 am doctor's appointment by himself (dropped off since we had another appointment at home)!
* He comes armed with flowers to ask not one, but TWO beautiful doctors to go to dinner with him! My shy brother!
* He can move his legs! At all!
* He can move them enough that it makes his neurosurgeon cry!
* She was overjoyed to come to dinner with him!
* The other doctor is going to fly in from out-of-state to go with him!
* Needlenoggine is swamped by doctors and nurses who took care of him and are happy to see him!
* We get in and out of the appointment in record time!
* He's lost 17 lbs.
* They were able to get his medications to him!
* Supported by a bunch of people, a counter and a walker, we have an upright picture!

Speaking of impossible, how's this for an image?

Apparently, we have magic buses here in the SF Bay.
(Should say "Wheelchair Securement Location")

Emergency Room 3/8/09

::Sigh:: I’m writing this from the Emergency Room of Highland Hospital at 4:24 pm, after yet another fun-filed day of 9-1-1 call, the fire department and an ambulance. Tuffy and I had spent a relaxed morning with the kids and had headed off to our local open-air mall to buy an Easter dress for Rorysaurus.

On our way home, we decided BY CHANCE, to take the route to the freeway past our apartment building. As we approached our building, I saw a firetruck and an ambulance parked outside. I parked, and asked Tuffy to go over and check to see who they were there for. No one was there, so he called Needlenoggin’s phone.

“Hello?”
“Hey, we were driving by and saw a firetruck out here. Are you okay, dude?”
“That’s what they’re trying to figure out.”

Crap.

I ran up to find 3 EMTs and 2 firefighters huddled around Needlenoggin in the hallway. Apparently, his blood-pressure had been dropping and spiking the hour we’d been gone, and his resting heart rate was down at 45 beats a minute (WAAAAY low). He had been feeling light-headed all evening, and in the morning, was REALLY out of it. He couldn’t reach us, so he called 9-1-1.

The EMTS were training, and one lady told me they wouldn’t take his chair to the ER or let me ride with him in the ambulance, or let him take his pain pills before he left. WTF? So, I went to get one of his RXs, and then headed to the hospital, where I was kept out of his room for nearly an hour.

When I finally got in, he was on O2, had some blood tests running, and there wasn’t much else they wanted to do except a chest Xray (to rule out a, as Christopher Titus would say, heart episode). I was getting ready to leave to go home and get ready to bring him his chair when the orderly showed up to talk about the xray.

“So, we’ll wheel you in there on the gurney. Can you stand up and walk over to the X ray table, then?” he asked, obviously worried about Needlenoggin’s light-headedness.

“Nope. Can’t walk to the table. I’m…” He was cut off.

“You don’t have to walk far!”

::sigh::

“I’m a paraplegic. I can’t walk to the table. Sort of by definition.”

“Not even a few steps?”

And people wonder why those with medical conditions hate hospitals!

A few hours later he was discharged with an official diagnosis of “::shrug:: No idea”, and told to come back if the symptoms returned. No infection, no potassium deficiency and no heart problems. Some of the symptoms seem to match the worries about his elavil/paxil mixing, though, so on Wednesday we’ll ask for a test on that from the neurosurgeons we’re going to go see.

Medication, Mediation and Meditation

It seems that Needlenoggin's psych meds aren't working as well as we hoped, because he's sort of spiraled into a very rough patch of depression. Perhaps the worst depression I've seen since he came home, including self-destructive thoughts and extreme apathy. We've upped the new med (which isn't at full effect after just a couple of weeks yet anyway, and are hoping for the best. He's a little better today. Keep us in your thoughts and prayers, huh?

On the upside, we did get in to see a WONDERFUL psychiatrist who has just upped Needlenoggin's depression medication. She does want me to take him in for a blood test, however, because apparently, two of the medications he's been on (in very high doses) since August, can have some pretty nasty interactions. Good to know, though, right?

I also got the job, so I'm working with another individual in a wheelchair (this one a professional young lady and power-chair soccer world champion). Again, it is only a few days a week, and I make less in a week than I have to pay for Needlenoggin's help in a day, but I will take all the help I can get my hands on.

Oh, and when we went out to SCVMC for a check-up, we met with some phenomenal doctors who wrote him all the prescriptions he needs, so we may actually be able to get him the medications that MediCal insists on denying. No progress yet, but we can hope it'll work. However, Needlenoggin met a family down there going through all the same rigamarole about "progress" and insurance due to a broken wrist. The guy is in about as bad a shape as Needlenoggin, and so my brother was able to give some advice, some "speaking from experience" and get some info on Project Walk as well.