1st Infusion Complete (pt 1 of 3)

With much fanfare, travelling, and a rant or 6, the first step of the Nurown trial is complete.  whirlwindLumbar puncture, infusion of stem cell, and 24hr monitoring period.  Then the return home!

Ok, so the start is like every other trip: IMG_5182Joey and Jessie showed up to watch the kids and drive us to the airport, White Mocha, arrived on time, and on the plane!  Then we re-read the email from Diane and…. oh, no more food past 0700.  Crud.  Ok!  It’ll be over soon enough, right?

We got to the hospital and met Diane and Cat,

I was going to take a ride but…

and went up into… another pediatric room!  It’s like they knew I was coming!


Oh, I have to disrobe?  uhm, ok… all the way?  Ok… hospital gown/Johnny, ok… Oh, NOW I need to pee in a cup?  Oh, the bathroom is down the hall and left/?  I know they do it on purpose so I can moon the whole pre-op.  Either that or I’m extremely callipygian (I’m gonna let you look that up) so I should be honored!

I’m not sure if you remember the last post, but I’m not like other patients with ALS.  I’m up there showing everyone the EV that Jack and Co. are building, being all excited and I don’t think there’s anything wrong with that!

My mutated cells.

Although… they asked me if i watched a lot of Home Improvement growing up… I’m not sure why?  And, another sneak peek at the EV PRE-Sparco seat!


They wheeled me back around 2 ish and kept me on my stretcher – and the OR crew have a big sense of humor!

They’re coming to take me away Ha Ha!

They made me lie on my side and curl up in a ball, then asked: “Are you comfortable?”


“I’m not wearing any pants.”

Ok, now – remember, I’m not like other ALS patients.  I’m lying there, on my side, they know I don’t like needles so nurse Lisa is holding my hand while they give me the lidocaine, and everything is good, so far.  Lisa moves out of the line of sight and they are talking.  Then, as I know I’m numb and he’s messing around back there and talking to the nurses, boom, my left leg feels the funny bone shock all the way down to my toes and it jerks, involuntarily.  Like when they zapped me during the EMG tests.  I tell them what happened, that I can’t feel anything in my back but my leg nerve got twitched somehow.  Then it happens again.  The third time was a little less, more of a dead leg tingling.  They talk and then it gets quiet…

…and the tunnel happens.

you know, when you are about to pass out and everything becomes a tunnel?

“I don’t feel good!  I’m gonna pass out!”

“Joe?  Stay with me, joe!!”

APPARENTLY, my pulse went down to 29.  But they got it back up, no worries, with some oxygen and wet washcloths and 200mgs of epi, if I heard right…  no worries.  Ok, lots of worries because no one really told me anything, and they were all conferring with each other in hushed tones and going back and forth. I kept apologizing but they weren’t listening…

APPARENTLY, I’m the only wimp in the study, the only one this has happened to.  go figure!

Finger lasers!  Pew Pew!


So they get me down to the long-term observation unit, and I’m on strict orders to not get up, and a slow return to sitting vertically.  When I can sit vertical, then I can eat.  Yeah, you heard that right!  Hour by hour I can go higher, and can’t eat till then.

After the procedure, my lower back hurt.  My tailbone area, not the puncture area, so I needed to pull my legs up while lying flat.

Ow.  Part 2.

Mistake number 1.  Then I didn’t alternate Tylenol and ibuprofen.  Mistake number two.  Luckily Mel was there and was taking care of me, and brought me sushi and a half-caf latte because I was under-caffeinated.


Let me tell you, Mel was a saint this whole trip.  After dinner, I was left to fall asleep, and a little bit of waking up for vitals, and it was morning.  I even was able to finally get up to pee in the bathroom at 3am!

A very special lady.


Part 2 will describe the mental aspect of the night and morning.  Basically, my back feels sore between the discs, and my head feels sore.  And my tailbone… I’m not sure why?  Also, and this is a huge problem, my hamstrings are REALLY TIGHT!!!  OW!  And they take my mind off anything else.

Mel came with egg bites and a coffee and got me out of the bed and into a chair!

I’m also finally wearing pants!

I was so excited!  Then the last labs, and we were discharged at 1500.  The best news is that because I had the vasovagal reaction (passing out because I’m a wimp), they wouldn’t do a lumbar puncture every visit.  WOOOO!!!


They wheeled me out to the car.  Part 3 will discuss this.  And we drove back and waited at the airport.  Mel arranged for a wheelchair at the airports,

Part 3.

and we switched flights from our 2 hr delayed one, and after a brief pat down, we flew home!

Just doing his job…

Again, there was a wheelchair waiting for me at the gate and was wheeled out to Joey’s car (part 3), who brought us home.  Thank you again for taking us to and from the airport!

This sign reads: “If you fall, fall FABULOUSLY!”


And we’re back.  Now, to see if I got the actual drug, and if it has effects on me.

1 thought on “1st Infusion Complete (pt 1 of 3)”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s