The SHORT-ish VERSION:  Nick has been released from the SCI unit (Fri, 7/24), is continuing to recuperate at home; can transfer between his wheelchair & bed or car; gaining strength & mobility.  “Home” renovation is advancing: plumbing, electric, AC, drywall mid-project. 

The LONG VERSION:  starting with the best news first!

DISCHARGE! Nick was discharged on Fri, July 24 – what a happy day for all of us!  Out-n-about on a bright sunny day!  That wheelchair transfer into the car at the hospital ... out at home, rolling up our brand-new wheelchair ramp--THAT was a pretty great day!

TRAINING: Right before Nick’s discharge, Ben and I spent several days at the SCI unit in their little “apartment” (situated right in the SCI unit!) along with Nick for on-the-job caregiver training, to simulate “what it will be like at home” . . . learning what-all we needed to know for his daily care.  His PT & OT therapists are fabulous teachers, along with the nurses who checked in on us each shift, giving us good pointers & helpful tips.  The PT team also realized what a shock it was for us—to have to learn this all-at-once unlike other SCI families in NOT-covid times who would have been in-on the changes to their loved one in a more gradual way than we did.  Despite the shocking changes, after 17 weeks apart, it was a great few days! 

It was encouraging to hear the PT and OT gals tell me “Nick’s a rockstar” while we were watching him transfer into our car while Ben spotted & the other PT guy monitored.  I replied, “Oh, you probably say that to all the patients—because you HAVE to.”  And BOTH gals shook their heads and said, “No, absolutely not, Nick IS a rockstar.” And then they went on to explain how he has always worked HARD to accomplish and do all the things they’ve asked him to do, sooner & faster than expected, and he’s always thinking ahead how to do different tasks or a short-cut.  Apparently not everyone is like that (?); in fact it sounds like very few try AS HARD as he has.  So, that made my heart explode with love for this man who ALWAYS works hard, all these many years! 

INFECTION DONE: In late June, we had an appointment with the Infectious Disease (ID) doctor who covered a whole bunch of info on the spinal fusion surgery, too (which will be on 8/11—more on that in a bit).  The ID team decided to discontinue the antibiotics on 6/22 as he’d been on it for 12 weeks at that point.  He’s still having pain in his back and in his shoulders (due to over-use & simply getting older & parts wearing out).  ID warned us to watch for signs of infection returning (fever, chills, sweats, worsening of pain or other changes in the spine or at that level which might be neurological signs the infection has returned).  All his labs are back to normal.  So!--no more PICC line!  Yay!

THE BIG SPINAL FUSION APPOINTMENT: Mid-July (7/14) Nick met with the world-famous Dr. Uzma Samadani (google her name to see what-all she’s already accomplished in her life) to whom he was referred by his neurosurgeon due to the complexity of what he needs for a spinal fusion.  Here’s a quick run-down of all the spinal fusion info:

THE MAIN PROCEDURE:  Spinal fusion itself involves placing rods, pins, screws on/in thoracic vertebra 1-5 (and possibly a bone graft) in order to stabilize the deteriorated bone of T3 (where the infection destroyed things & caused the spinal cord to “burst”). The point of the fusion is to stabilize the area, reduce the pain Nick’s still having (rated at a 3 or 4 on the 1-10 pain scale).  The spinal fusion decisions (such as: how much to do & type of pieces to use) will be decided DURING the surgery as she told us “we’ll make those decisions once we’re in there and see what we have to work with”.  They likely will NOT put in a spacer/expandable cage at the T3 level as there can be issues with the heart & lungs apparently at that level—will decide on-the-spot. 

A SECOND PROCEDURE (done during the same surgery) will be to implant a spinal cord stimulator device in his abdomen with wires at T11-12 in order to PERHAPS help with the low blood pressure problems AND maybe to help increase Nick’s sensation in the bladder & bowel area.  This implantation procedure FOR NICK is “off label” because Nick’s injury was “insidious” (infection) rather than “traumatic” (like a car accident).  The device IS part of a research study for traumatically injured SC patients, so docs are hoping to gain info from this that may help other quads or paraplegics.  The device will be programmed & “turned on” after he’s healed up from the surgeries. 

1. RISKS: as with any surgery there’s the chance of pain, infection, bleeding, damage from mal-positioning of the fusion pieces and/or a pneumothorax (punctured lung) which might require a chest tube.  The stimulator device is FDA approved but Nick’s surgery is “off label” use but shouldn’t be an issue since he’s already paralyzed at that level (she said this makes him the “ideal” candidate!). 

2. RECOVERY: He will be on the surgical recovery floor for 2-3 days or so, then moved back to the SCI unit (again!); no reaching across from one side of the body to the other (like dressing) for at least two weeks so the incision has time to heal.  He’ll have some issues with transferring in & out of the wheelchair so the SCI unit’s equipment & staff will be helpful for those mobility issues.  Physically, docs think his recovery time should be about 6 weeks (healing-wise); they were open-ended with how long he might be hospitalized—so “we’ll see.”  It takes roughly a year for bone to heal (the fusion involves bone grafts, possibly).

In OTHER NEWS . . .

Nick has been home since Friday, July 24.  We have a hospital bed set up in our living room while the bedroom and bathroom are rounding the half-way mark to the finish line of completion!  The dry-wall guy did the first-round of mudding on Friday; I think there’s two more days of that. 

My brother Ken, his son-in-law Andrew, and our son Ben worked hard to get the wheelchair ramp built.  Ken just retired in June as a woods/shop/tech teacher; he always had his seniors do a “construction building project” (usually built a house on campus which was then auctioned & moved to a building site)—so he’s had LOTS of hands-on experience.  He had those two young bucks working on the ramp, and though they ran into a few snags on the handrail they “gotter done,” and what a blessing to us as their work made it possible for U. Nick/Dad to get into the house.  Nick’s a champ rolling up & down that thing! 

CHANGES . . . to the morning wake-up and evening bedtime routines, but as with anything, each time it gets easier, and just like anything else, we’re looking to be more efficient and “getting done” each day.  God is good even in this—because about a month before Nick came home, I started waking up (without an alarm) at 5am.  And that is exactly what I need to get our morning wake-up routine in and STILL have time for my own morning stuff to get out the door “on time” for work and not have to race around like a maniac.  I might be more squished for time once school starts back up at the end of August when I have to be there by 7:15 to beat the kids in the door!  BUT, for now though, summer routine means a more relaxed schedule. 

DELIVERIES of various kinds have arrived.   One piece you might find interesting is called a MoLift (this is the little brother of the big overhead Hoyer Lift—google that to see how they move patients who cannot move themselves).  PT wants us to have a MoLift on hand “just in case” he ever lands on the floor & we can’t get him back in his chair.  God willing & the river don’t rise (!!) we will NEVER have to use THAT thing.  But if we do—Ben & I both learned how to use it during our training.  For those who might not know how it works—if you’ve ever lifted an engine or a horse … it’s kind of like that, only with a person.  😊  Just sit back and enjoy the ride!

The VA has also ordered a ton of “prescriptions” which are being delivered, too.  Things like the standing frame, hospital bed, commode/shower chair, plus all the paper supplies, gloves, etc.  Don’t take it for granted, ever, because not all ‘plegics get the equipment or supplies they need—because many insurance companies do NOT let doctors actually prescribe things needed for normal living (like say a shower chair).  Thank goodness the VA isn’t like that.  

BLESSINGS!  Speaking of blessings—we are the recipients of the overwhelming love & friendship of so many of you:   

THOUSANDS of dollars have been donated towards Nick’s GoFundMe account & sent in the mail—all of it enabling us to pay upfront for every piece of lumber, drywall, plywood, screws & nails, plumbing & electrical and air conditioner!  So far, so good!! We are likely to fall short, so if you want to share that link with your friends—we would be very grateful!  Thank you many times over for your generosity—what a weight you have lifted from our shoulders—whew!! 

HUNDREDS of hours have been donated by friends who gave up their afternoons or evenings or Saturdays to demo/tear out the old drywall and insulation and manually haul that to the dumpster out front.  A dear friend re-did the two end-walls on our garden shed (new siding & doors!) so we’re not the junkyard of the neighborhood anymore!  Some guys prepped things for the plumber and electrician and tile guy.  Others came to frame in the new walls and pocket doors.  Our sons prepped the windows for switching out in our living room and bedroom. 

Your drops of sweat and hours of time have saved us (quite literally) THOUSANDS of dollars on the final expense of this renovation.  We can NEVER thank you enough—though we have it in our hearts to try!

FRIENDS LIKE THIS . . . who love us to the extent of giving up their free-time, their weekends and time with family—to sweat in our 100+ degree oven-of-a-house (while the ceiling insulation was out), to lift & haul, to be covered in sawdust and drywall dust.  Uffdah!  Our newly adopted “brother David” will always hold a special place in our hearts for the selfless work he did with the initial framing of the bathroom & closets and got so much done & was such an awesome leader for the demo team. 

OUR CONTRACTOR:  We have been extremely blessed by our general contractor (Dan Heim of “Rock Solid Construction”) who has had his own health challenges as this has been going along—and has been so patient with all our questions (!!). We are so thankful for his efforts on our behalf!

FUTURE PLANS
1. Nick’s spinal fusion and device implantation surgery is on Tuesday, August 11th.  We will stay at the Fisher House (about a block from the hospital) the night before to be ready for the 5:30am check-in the next morning.   The hospital still isn’t allowing visitors, so I’m planning to spend the surgery day at the Fisher House—just to be close by & get updates. 

2. Painting Crew!  Those who volunteered to paint—getcher brushes out, friends—because there WILL be a painting party in Elgin sometime soon!  If you haven’t already signed up for this FUN event, let me know—and I’ll include you on the email with dates & times. 

3. Eventually we will have a housewarming party for donors and helpers to visit and see how things turned out.  We want you to see what your hard work & dollars has accomplished!  Stay tuned for deets! 

4.  After Nick recovers from the spinal fusion, he will still have a LOT to do and re-learn.  Number one on his list is vocational rehab and our “professional driver” will be learning how to drive using hand controls.  You can just imagine how much he’s looking forward to this!

I’m putting the finishing touch on this update on Sunday evening….we went to Jim & Denise's for brunch yesterday with the three kids--Sam flew in earlier this week (see photo) . . . and were glad to be back in God's house today -- our first time in church (in the building) since mid-March.  What a BLESSING to worship again with our Christian brothers & sisters—and to BE with them in person again!  Oh, friends, you have cheered our hearts so much—even if we couldn’t see your smiles (behind masks) or feel your hugs—we felt all the love in your greetings!  Thank you for walking with us in this challenging time.  Thank you for continuing to keep us in your prayers.

PRAYER REQUESTS:

Thanksgiving to Almighty God for His amazing plan in all this & carrying us through this challenging journey….and for our friends & family who’ve donated dollars & hefted hammers for our benefit.  

For Nick’s surgeon – steady hands, wisdom & God’s guidance as she works on his back.  And for his other caregivers – patience & kindness.  And for the rest of us to NOT WORRY!

For success of the fusion to alleviate Nick’s pain and that device implantation will help him gain back better blood pressure & bladder/bowel sensations.  For patience as he goes through recovery after surgery—for time to pass quickly when it seems nothing is happening.