Showing posts with label GBS. Show all posts
Showing posts with label GBS. Show all posts

Wednesday, May 21, 2008

Long Entry Ahead. Consider Yourself Warned.

It's May 21.


Last May 21, Matt woke up with tingly hands and numb feet.


Within a week, he was diagnosed with Guillain-Barré Syndrome and hospitalized for two very long months.


As summer approaches, I've thought a lot about last summer—our first one here in Portland. And how it didn't exactly turn out as planned. Those two months had such a lasting impression on our little family that it's something we think or talk about nearly every day.


I've never been naive enough to assume life would be perfect, but I never imagined that in one single summer I'd experience:

  • a hospitalized husband
  • single parenthood
  • running a business I knew nothing about
  • assuming role as the family's sole breadwinner
  • establishing life in a new city without my husband
  • having to ask for—and accept—help (lots of it) on a regular basis

People say everything happens for a reason. Sure, whatever. A year later, we still don't know why Guillain-Barré slammed our little family. And I doubt we ever will. Even though Matt is 99.9% better (still dealing with numb, painful feet), we still reel sometimes from the stress, worry, and uncertainty of last summer.


But, in hindsight, I guess we learned a few things:


If something crappy had to happen, it happened at the right time, in the right place. A few weeks earlier (before our move), and insurance issues could've kept us in Houston indefinitely. A few weeks later, and we could've had the extra expense of a workspace. My sister was in Portland for the summer. My parents and in-laws weren't overbooked travel-wise. They were all a huge help. Lots of little (and big) things lined up in our favor.


Crappy experiences don't last forever. They either end or you get used to them. We're glad ours ended before we got too used to it.


A penny saved is one less penny to worry about. Money in the bank minimized a HUGE stressor when the family breadwinner was incapacitated. Hooray for our miserly ways!


The healthcare system is screwed up. But don't trifle with it. Health insurance is non-negotiable. ($6,500 in hospital bills was crappy, but $150,000 would've been beyond crappy.)


It's ok to question doctors. Like if they think your condition is chronic. Or if they want to prescribe a lifelong steroid treatment. If your gut says otherwise, say so.


People are kind, generous, and thoughtful. We were recipients of so much kindness last summer that we'll never be able to repay it all. We're trying to at least pay it forward a little by being kinder, more generous, and more thoughtful, especially when others are having crappy experiences. Meanwhile, to all the kind people we're indebted to—the ones who provided kind words, encouragement, babysitting, care packages, prayers, phone calls, financial help, clean laundry, pampering, a listening ear, hospital visits, meals, notes, drawings, fun diversions, supportive e-mails, etc. etc. etc.—many, many, many thanks!


Life is good. There's nothing like a crappy life experience to help you recognize the good things in life. To ward off bitterness and self pity, I kept a running list of things I was thankful for. All the kind people mentioned above made the list. It was a very long list.


Take nothing for granted. Especially health. And loved ones.


So anyhow, here we are, a year later. Our day was unremarkable: Matt made mobiles, I did paperwork, and Riley spent the afternoon playing with Grandma D. But for us, after last summer, an unremarkable day is pretty darn remarkable.

The end.

Friday, January 18, 2008

My Name's Matt, and I'm a Workaholic

Here's Matt at his mobile-making shop.


Yesterday, he worked from 8:30 a.m. until 10:45 p.m., with a short dinner break thrown in.

That's what happens when, oh, five commissions are due within a two-week timeframe.

Riley and I missed him, but we figure the return of his workaholic ways is one more sign that he's really, truly better.
note: my good camera is getting repaired, so you'll have to deal with second-rate photos for awhile. so sorry!

Wednesday, November 21, 2007

#1 on the Thanksgiving List

It was six months ago today that Matt woke up with tingly hands and feet. We had no clue it was Guillain-Barré. Or that it would lead to near paralysis and eight long weeks in the hospital.

Now life's back to normal. A few minor residuals aside (numb & painful feet, tingly hands, and occasional fatigue), Matt's as good as new.

That's good. Here's why:

Back in August, I wrote about how Matt's neurologists though he might have CIDP, a chronic version of Guillain-Barré. The docs wanted to get him on a lifelong steroids treatment asap, but Matt resisted. We weren't convinced their diagnosis was accurate, and Matt didn't want to take drugs needlessly for the rest of his life.

When he met with the docs to question their diagnosis, they re-evaluated his condition and said, "Well, you're doing pretty good. But there's still a chance you have CIDP. So don't get your hopes up." (Ok, maybe I just interpreted that last part...)

They told us that, technically, if Matt didn't relapse within six months of onset, THEN they'd feel comfortable NOT calling it CIDP.

So my point is:
  • It's been six months since onset.
  • Matt's doing better than ever.
  • I think it's safe to say that Guillain-Barré is behind us.
  • Anybody want to buy a barely-used wheelchair?

Thursday, September 27, 2007

PT Grad

Matt went to physical therapy today for the first time in three weeks. (He skipped a few, thanks to health insurance issues that needed sorting out...)

He walked in—no walker, no cane, no crutches—and his physical therapist was amazed. She said his progress this past month has been miraculous (I agree), and there's not much more she can do for him.

Yay for physical therapy graduation! (...and one less insurance issue to hassle with!)

And here's proof of all that walking:

Saturday, September 8, 2007

It's been a month

...since I posted the meaty update on Matt. Here's his progress on those things we hoped he'd be able to do soon:

Walk longer distances with his forearm crutches: Matt is gaining a lot of endurance. This week we've walked to a few different destinations in our neighborhood, like the park, the barbershop (finally!), a pizza place, and the hardware store (all five or six blocks away). Major milestone. Now Matt won't feel so cooped up.

Walk (very) short distances unassisted: Matt's been getting around the apartment without his crutches. At first he was wobbly, but he's gotten much steadier. Of course, it helps that he's usually within reach of a counter, table, or bedpost, in case he loses his balance.

Type: Still hunting and pecking, but getting faster.

Open a sealed jar: I still do the major jar opening. Ironic, since I've always been the weakling.

Carry things while walking: He can carry stuff around the apartment, now that he gets around without his crutches.

Make his small mobiles: He's made 11 already! (Just a fraction of his back-logged orders.) The first few were difficult and frustrating, but it's getting better. Just a matter of regaining hand strength. And a few calluses...

Do the dishes (oh wait, that's what *I* hope for...): He did them tonight. Yay! I'm a happy wife!

Monday, August 27, 2007

Not-unhappy Anniversary

It was three months ago today that Matt was hospitalized.

I've gotta say, it's been the longest three months of my life. Lots of ups and downs. (But, honestly, mostly downs...)

The good news is that lately we're having increasingly more ups. Matt is getting stronger every day. Today he said he felt better than he's felt since he first got sick. And he's progressing so well that we're going to seek a second opinion on the whole chronic/need-for-steroids thing.

Tuesday, August 7, 2007

That Update I Promised

Sorry to be MIA. Caring for my dudes has been time (and energy) consuming. But here's an overview.

At his worst about two months ago, Matt couldn't:

  • Sit up unassisted
  • Open jars, tubes, bottles, or just about anything
  • Read well, thanks to double vision
  • Lift his arms or legs
  • Talk without lisping, thanks to a numb face
  • Move from his bed to a wheelchair unassisted
Now Matt can:

  • Walk short distances with forearm crutches (going from our condo to the car half a block away is enough to wipe him out)
  • (Sort of) write
  • Get from the couch to the floor to play with Riley (but getting back up is the hard part)
  • Lift Riley while he's seated
  • Stand unassisted momentarily
In a few months, Matt hopes to be able to:

  • Walk longer distances with his forearm crutches
  • Walk (very) short distances unassisted
  • Type
  • Open a sealed jar
  • Carry things while walking
  • Make his small mobiles
  • Do the dishes (oh wait, that's what *I* hope for...)

Latest news: a nerve-conduction test showed a lot of damage to Matt's nerves' coating and the nerves themselves, so the doctors think his condition may be chronic. (For you medical folks out there, it's called Chronic Inflammatory Demyelinating Polyneuropathy. Blech.)

Anyhoo, that means the numbness in his extremities may linger indefinitely and he may be susceptible to future flare ups. Steroid treatments should suppress him immune system (to prevent his body from attacking his nervous system again), but long-term side effects from steroids aren't so great. Like Roid Rages. (Kidding. Different steroids, different side effects.) So let's, I dunno, hope the doctors are wrong?

Sunday, July 29, 2007

We Have a Winner!

Yesterday, before collapsing (quite literally) into bed, Matt hobbled three steps—without his walker! Yay!

(But when it comes to speed-crawling, Riley's still the hands-down winner.)

Monday, July 23, 2007

The Race is On

Who will be first to walk unassisted—Matt or Riley?

Tuesday, July 17, 2007

Daddy's Girl's Vocabulary

Riley's favorite word: dadadadada

Used any time:
  • We approach any brick building that slightly resembles Matt's rehab center
  • She enters a sterile, hospital-like setting
  • I ask, "Who are we going to see?"
  • She sees Matt (goes without saying, right?)
And Matt was worried she'd forget him while he was away. Ha!


Incidentally, Matt is scheduled to return home for good tomorrow. He still has a long way to go, recovery-wise, but Riley and I will both be glad to have him back. And hopefully, before long, Riley will quit associating hospitals with Daddy!

Tuesday, July 3, 2007

Eliminating Expectations

Well that July 3 timeline was a little off. So we've decided to forgo timelines altogether and just let Matt's body recovery whenever it wants. (Although he'd like to be home for Riley's birthday on July 25...)

Turns out, it's not unheard of for Guillain-Barré patients to require a second round of that immune system-boosting treatment. And if he becomes weak and numb again, he may need to continue treatment like steroids for awhile to aid his recovery.

Meanwhile, he's done at the hospital and heads back to rehab this morning. I've gotta figure out how to sneak in sparklers tomorrow... (Happy fourth!)

Tuesday, June 26, 2007

Bad News/Good News

Over the past several days, Matt's strength deteriorated and his numbness returned. So he's back at the hospital for another round of the immune system-boosting treatment.

The upside:
  • The hospital's great view
  • No more roommate, no more non-stop yammering!

Sunday, June 24, 2007

I'm So Glad When Daddy Comes Home...

Er, scratch glad. Make that giddy.

Riley was so excited to have Matt home for the weekend that she spent yesterday crawling recklessly in circles, throwing everything in sight, while shouting "dadadadada."

Matt returns to rehab tonight. To a little peace and quiet.

Wednesday, June 20, 2007

The Timeline

The doctor has extended Matt's rehab stay until July 3-ish. Since I've got my hands full taking care of Riley and Matt's business*, she wants him fairly self sufficient (able to bathe himself, get in and out of bed, etc.) before he comes home.

He'll gradually transition from a wheelchair to a walker to forearm crutches to—hopefully sooner than later—nothing! Which reminds me to ask...anybody out there got a spare front-rolling walker we could borrow? (Insurance will only pay for one of the above.)

*Warning: shameless promotion ahead. If you're looking for a creative gift idea, fun decoration, or a random way to blow a few bucks, how about buying a mobile? It'll support a good cause: paying for hospital bills and keeping frozen bean burritos on the table. (www.hangingmobilegallery.com. Spread the word.)

Friday, June 15, 2007

Rx: Laziness

Matt's doctor says his work ethic is too strong. She thinks his hard work in therapy is preventing him from resting enough, possibly slowing his recovery. Doctor's orders? Be lazy.

He's felt pretty weak all week. But here's some good news: the numbness in his face is mostly gone. His speech therapist says that's a good sign his nerves are repairing.

Incidentally, Matt gets to come home for a few hours tomorrow—first time in three weeks! Yay! I promise to enforce the laziness prescription. No diaper changing, no dish washing, no trash emptying...and no, not even mobile making.

Now let's see whether our place is wheelchair friendly...

Monday, June 11, 2007

Life In Rehab

In rehab each day, Matt works with four different types of therapists: physical, occupational, speech, and recreational. He also meets regularly with the doctor who’s overseeing his progress. Between all that—plus his roommate’s endless supply of hunting stories—he’s exhausted.

With Guillain-Barré, you have to rest—a lot—if you want to recover, so the therapists have worked plenty of downtime into Matt’s days. And although he’s regained some strength, he still lacks endurance, so just getting dressed each morning merits a nap.

Full recovery will take more time than we had anticipated. So maybe we’re supposed to learn patience? And if we've learned that already, can he hurry up and recover?

Friday, June 8, 2007

The One Thing I'll Miss

Matt was released from the hospital this morning! He'll spend the next 10-ish days in an inpatient rehab center where they'll help him regain his strength and coordination. He's excited to be out of the hospital, and I'm excited to have him closer to home.

Although I might miss the view from the hospital. (Which, I might add, is even prettier in June than whenever this pic was taken).


Tuesday, June 5, 2007

Mind if I Vent?

Remember when I said I was grateful for health insurance? I take that back.

Matt's new health insurance—which started May 1—thinks that, since he needed medical care so soon after his premium began, that this was a pre-existing condition. That's very bad, because pre-existing conditions aren't covered under our insurance. They're looking into it, and they shouldn't find find any evidence, because the doctors say Guillain-Barré isn't something caused by pre-existing conditions—it just happens. Plus, he's been completely healthy the entire 9 1/2 years I've known him.

But somehow I still feel a bit stressed out about it.

And ironically, the hospital can't release him until the insurance thing gets sorted out. (Don't ask. It's complicated.) So...who knows how much longer he'll be there.

...btw, Matt thinks the worst is over. He's slightly stronger than he was a few days ago, but he's still uncomfortable and very weak. And a little discouraged about no end in sight for his hospital stay.

End of venting. Read today's other posting for happier stuff.

Sunday, June 3, 2007

Family Photos: Take 17

So we tried taking some family photos today. Sure, the hospital isn't the best setting. But aside from that, how do you get everyone to:

  • smile
  • look at the camera
  • not chew on pencils

simultaneously?



Don't be fooled by Matt's appearance. He was having fun. Despite a few I.V.s, lifeless limbs, and a slightly numb face.

And some good news: He felt stronger today, which may mean he's on his way to recovery. Yay!

Friday, June 1, 2007

Things We Take for Granted

The ability to:


  • grip a toothbrush
  • walk to the bathroom
  • raise your arms to shampoo your hair
  • dial phone numbers
  • write
  • open ketchup packets

With Guillain-Barré, you get weaker and weaker until you hit rock bottom—a point that's different for each patient. Then you plateau at the bottom for awhile before things improve.

We don't know when rock bottom will occur, but right now Matt's ability to move is disappearing more each day. Gross motor skills are labored and fine motor skills are practically impossible. In worst-case scenarios, paralysis spreads to the lungs, at which point a respirator becomes necessary. But the docs tell us Matt seems to have a relatively mild case. We're grateful for that.

Let's just hope for a speedy recovery!