End of month 1

John had his surgical consult on Wednesday, and it went really well. He liked the way the surgeon answered his questions (even when he wasn't thrilled with the answer), which was reassuring to me. At this point, he does not need a second surgery: the graft is parallel and looks strong, and his spine seems to be healing nicely. He'll have a follow-up in a month, and we have to keep watching it for a while, but so far, so good. He still has to wear the neck brace for at least another month before they start weaning him off it (the answer he wasn't happy with), but that's a small price to pay to avoid a second spinal surgery.

He can now get himself standing from a seated position, though he needs someone there in case he pitches too far forward. In PT yesterday, he got to try an "obstacle course", with little cones and rubber bumps laid out of the floor for him to step over -- a new challenge, as his PT explained, to keep the muscles guessing and working. He won a few of those challenges and the cones won a few -- and soon I'll have to bring him a new pair of sneakers, at the rate he's working out this pair!

Most importantly, his spirits are great -- my husband is a fighter, and he's fighting to come home to us! So it would be really nice if the football gods could reward his hard work with a fun game tomorrow... GO Irish!

One month

Just a pause to thank all of you who have supported us in so many ways in the past month -- we count you among our blessings.

Tuesday, August 28

John had his weekly benchmarking in PT this morning -- his new accomplishments:

• He can (mostly) stand up from a seated position;
• He stood and kept his balance for 2 minutes;
• He stood and kept his balance for 30 seconds with his feet together;
• He stood and kept his balance for 10 seconds with his eyes closed.

I went in to have lunch with him, and he was happy to report that he still loves my meatloaf! I also accomplished a first -- I made his lima beans for him (the FIRST time I'd ever cooked them) and he ate all of them :)

Tomorrow, he has his surgical consult, so we should know soon if he needs a second surgery to reinforce the fusion from the first one.

Sunday, August 26

My chivalrous husband stood to greet me (with my help, but his idea) when we arrived! And when he hugged me, he noted, “I’m still taller than you!” a fact confirmed when I moved his walker from the ability lab to the hallway for him this afternoon. He also stopped to hug me goodbye in the middle of his transfer back to bed:

John had PT during our visit today, and he was a little bummed that he had to have therapy while we were there, interrupting our visit. I was glad, though, because I knew it would give him the chance to show Nora what he’d been working on. She waited in his room while he got started with Mike down in the ability lab. Mike asked him what he wanted to do, and John said “I’m guessing I have to walk.” Mike then egged him on – “You want to show off for your family, right?” So he took him to hallway (instead of the treadmill) and got him started on the loop (which, btw, is officially 270 feet, though Mike says 280 to account for the wide turns most patients take). When he was about 50 feet from John’s room, I went to get Nora to watch the “parade.” She was at the end of the hallway when John turned the corner and started moving toward her. I wasn’t able to capture the look on Nora’s face when she saw John on the walker because I was enthralled by the joy and excitement on her face – but that’s ok because John saw it, too.

 

 

"Let me help you, Daddy!"

 

 

 

Mike's idea of Sunday afternoon fun -- let's add weights to his ankles before lap two!

 

 

the end of week 2 at RIC

When Nora and I talked to John tonight, he was tired -- he'd had 2 hours of PT today. During the first session, he worked on the treadmill. During the second one, he did 20 minutes on the bike (I haven't seen this yet, so I'm not sure how it works) and then did an entire lap around the floor on the walker with his PT holding the loop on his gait belt (if you look closely on the earlier photo of him on the walker, you might see the red belt over his red Sixers shirt).

He was also very happy to report that he can now manuever his wheelchair around his room enough to get to his closet.

And we're closing out the second week at RIC...

Thursday, August 23

John's report for the day:

Yesterday, he ate a Snickers bar in SLP (speech therapy), so he's been cleared for a regular diet.

In PT this morning, he did the whole lap around the floor on his walker with the arm rests (see the photo from last Monday). I'm guessing it's 100 meters, Dad's guessing 270 feet (yes, we're working in different units) -- stay tuned for the actual distance.

Today, Nora and I had a brief lunchtime visit. John had a note for her: he had written his name, birthdate, address, and phone number! (I really wanted to post a photo of his first writing, but I'm sure you all understand why I'm not posting this particular note.)

His spirits continue to be good -- he enjoys hearing your messages/reading your cards and emails. Thank you for keeping him in your prayers.

Thank you

Just a quick note to say thank you to everyone who's commented on the blog or sent us emails -- we've read all of your notes, even if we haven't had a chance to reply yet. Thank you for the prayers!

Monday, August 20

This morning I joined John for some of his therapy. At the end of OT, he had more to show off: he flexed his right foot for me!

He worked with a diction program today, programing his voice in so that he’ll be able to use Dragon Dictate to write (edited thanks to our personal, on-call 24/7 OT).

In PT, he worked on standing up himself, and it looks like that’s coming soon. Mike, (his primary PT) also tested for progress. Here, he’s standing and balancing for 30 seconds:

And here, he’s moving (with Mike’s assistance) for 6 minutes:

His OT taught me how to help him transfer from bed to his chair and back again, so now I can kidnap him ;) We had homemade split pea soup with bread from Panera for dinner, and then spent a quiet evening together.

P.S. I got home a little bit ago from my overnight visit and John just called to tell me how PT went this morning (Tuesday): on the treadmill, Mike hooked him up to Geppetto (the strap that helps his knee bend) on the right side, and he got his left knee bending on his own for 5 minutes!

P

Sunday, August 19

Nora and I drove in with Nana and Grandpaw to visit John for the day. Nora and I made a ham and cheese quiche for lunch, and for a special treat, I made brownies for dessert. Nora had a fabulous time sharing a homemade meal with Daddy. Then, after he was finished with therapy for the day, we took him on a short walk to the Lake Shore Park (a block north of RIC).

Yes, she's playing on the playground with pink sparkly sunglasses and pink sequined shoes
(she was reluctant to go on the wood chips in these shoes).

We had hoped to watch part of the Air and Water show, but couldn’t see much (though we could certainly hear the jets overhead!). Nora didn’t mind, however – she had a great time playing at the park, particularly “doing gymnastics” (which involved me holding her up as she twisted around on the bars).

Notice Nora's rock star pose...

Grandpaw remembered to have a picture taken of the three of us on our first trip out together:

Back in RIC, while John and I checked his email, Nora appropriated his wheelchair for a hallway excursion (sorry I missed a photo of that) before curling up in it to watch The Princess Diaries. Then we headed out – us for dinner, leaving John to take a nap.

Nora and I took Nana and Grandpaw to Pizano’s for Chicago Pizza:

When we got home and called to say goodnight, John was watching his Steelers.

Friday, August 17

Last night, I headed into the hospital for date night, leaving Nora with Nana and Grandpaw. I spent the night with John (and felt like a college kid sneaking into her boyfriend’s dorm ;) …)

Today, I got to go to OT and PT with him. My husband amazes me on a daily basis – he is working so hard! (and now I’m gushing & using exclamation marks and he’ll yell at me!) Piper, his OT, helped him solve a few daily-living issues today. She got there before he had finished getting ready after breakfast and got him set-up for the day. Later, she got him a cup he can pick up and a book board so he can read. She worked his arms and wrists. And she got the correct size wheelchair delivered so he can wheel it himself comfortably. All in all, a very successful day of OT. And as Jen reminded me, “Don’t ever worry about not being ready for an OT appointment – OTs show up to help you show up for life!”

In PT, he did a quarter mile on the treadmill in 3 segments (a 5-minute, a 10-minute, and a 5-minute one); by the last session, he was kicking up a storm and his knees were firing up and bending better than they had yet. He’s been working so hard and it shows – as does God’s mercy.

After his therapy sessions were finished for the day, we went down to the cafeteria for coffee to go with the Polish cookies his roommate gave us. We got a couple of quarters back in change, including the Hawaii quarter – I’ve been looking for that for 4 years and now that I have it, Nora’s collection is complete! A wonderful memento of a lovely day.

The view from the rec room on his floor:

And us on our "date":

Milestones of the day:

This morning, he realized that he can flex his left foot at the ankle again.

When I asked his physiatrist if I should start building a wheelchair ramp for the house, he said not yet...

John has left the building...

When I called John this morning, he was out at group therapy (OT)  -- and when I talked to him at lunchtime, I realized he was really out at therapy: Piper (one of his OTs) took him and three other patients out to the Farmers' Market a block away from RIC. She fitted him with special gloves (with a really strong grip), and he was able to wheel his wheelchair part of the time. He's promised to take me to the Market the next time I'm able to visit on a Tuesday.

Monday, August 13

I took Nora to visit John today:

and he made her day by letting her cuddle up with him to watch Curious George.

Therapy went really well today. During his OT session, he learned how to use a fork holder to make eating easier. During PT, he used the special treadmill (with a harness) and did 2 5-minute sessions walking (with the PT's assistance)! And over the weekend, they finally got the sand washed out of his hair.

Travelin' Man

The State Troopers flew John off the island:

And a medical air ambulance brought him to Chicago:

Saturday, August 11

This morning, after getting dressed during OT, John was moved up to the 9th floor. You can check it out here: http://www.ric.org/aboutus/mediacenter/press/2012/new-patient-recovery-unit/ He's settled in, and I couldn't be more thrilled with the set-up. There's a state-of-the-art ability lab, a family room where we can sit at tables with Nora to eat meals (and a refrigerator we can keep food in) -- and HOPE.

And I saw hope in action today:
John STOOD during PT this morning! Sara, his PT, helped him up from the bed, and then with her support, he stood. AND he was able to straighten up his back and hold himself with that wonderful ramrod posture he has! I will long treasure the look on his face when he realized he was standing.

Settling in to RIC

I've told a lot of you these stories already, but somehow never wrote them up. And someday, I'd like Nora to know about Daddy's first days at RIC, so here's a very after-the-fact post ;) [written 8/12/13 -- yes, you're reading the year correctly!]

On the list of frustrating things for John at AtlantiCare was the fact that when the nurses turned him and shifted his pillows every 2 hours, he would end up too far down the bed with no room for his feet (a frequent pre-accident problem, too). I spent a lot of time helping his nurses and techs shift him up higher. This afternoon, after John was assigned a room on the 6th floor, his nurse, Bruno, came in to help us get settled. John had been transferred from the gurney to his new bed, and when Bruno asked if there was anything else we needed, one of us told him John needed to be shifted up higher on the bed. Bruno's answer? "Or we could extend the bed." Very funny, Bruno, very funny -- except he really could extend the bed! He showed us the button to push that gave the bed an extra 6 inches at the foot of it. Finally, John was in a bed that fit him!

With the bed issue resolved, I made my request, telling Bruno that John needed a shower and a shampoo. I don't think he believed me when I told him John's scalp was still full of sand, because when I saw him the next day, after John had gotten his shower, he asked me why they hadn't tried to get the sand out in NJ (!). When I told him that several different people had tried every day he was in PCU, Bruno was shocked. But I'd warned him that John brought half the beach with him to Chicago...

This attempt was successful because they were finally able to give him a real shower. They put him in a "boat" (this sounded scary to me, given the reason John had ended up in the hospital) that they could wheel into the shower (like this):

and they FINALLY got all the sand off his scalp!

Third highlight (as if the plane ride wasn't also a highlight): we met with his physiatrist, Dr. Chen, who tested John's muscles' response and sensory reactions to light touch (see the ASIA score worksheet below):

 

Dr. Chen was very encouraged by the sensations he was able to detect and he told us he thinks John is an ideal candidate for the 9th floor ability lab!!!! (John will tease me for the multiple exclamation points, but they are DEFINITELY called for here!) The 9th floor is where the patients most likely to achieve a highly favorable outcome go -- this is HOPE! This first night (Friday), John was in a private room on the 6th floor, and they brought me a pull-out chair-bed, so I was able to stay with him. Saturday morning, they had a room ready for him on the 9th floor, so we made the second happiest walk/elevator ride of my life Saturday morning, where I got him settled into his official room and met some of his therapists, before heading to Millennium Station and South Bend, where Nora would be joining me in the morning.

I wanna hold your hand...

We continue to see small signs of improvement. I'm glad John's getting PT each day (and not just because early therapy is key to long term prognosis) because her trained eye sees these little signs of improvement and she draws my attention to them. Who knew you could measure changes in ability to return to center? Who knew what "ability to return to center" even is? (I did, I can hear my sister answering ;) -- but who else?) So, return to center is the movement of straightening your core back to vertical when you're sitting down and you lean left or right, bending at the waist (at least this is where she's measuring it). It's a question of how well you can move your trunk and whether you can do it without leaning forward or backward.

In other exciting news, John was able to squeeze my hand today... the most lovely feeling in the world.

[Now that we are firmly past the crisis stage and safely into recovery, I'm adding some posts to fill in details from John's time in AtlantiCare to keep a record for later on for Nora.]

Wednesday, August 8

John passed his swallowing test today -- real food is on its way up to him, and his surgeon has cleared him for transfer to rehab!

And Nora is on her way to AC for a Mommy, Daddy, Nora afternoon --  what perfect timing! She and I will have our picnic lunches with him as he eats his first meal.

Lunch date!

This afternoon, John had a second swallow test and he PASSED so he's been cleared to start eating real food! His appetite had already started to return, so this is wonderful news for him (plus, the rehab hospital wouldn't accept him with a nasal feeding tube, so this is another hurdle cleared on the path to rehab).

And just in time, because look who came to have lunch with her Daddy:

We had a picnic lunch in John's room -- some family time for just the three of us before John flies out to Chicago early Friday morning. When it was time for him to rest, Nora and I headed out to the outlet shops to buy him clothes for rehab (if we had to be stuck in a hospital far from home for two weeks, at least we were somewhere I could buy everything we needed!) and then up to the Boardwalk for some ice cream:

Across the Boardwalk from Rita's -- sadly, by the time I'm actually posting this picture, huge portions of the Boardwalk (and maybe even this section) have been washed away by Hurricane Sandy

 

 

[Now that we are firmly past the crisis stage and safely into recovery, I'm adding some posts to fill in details from John's time in AtlantiCare to keep a record for later on for Nora.]

Friday, August 3

11:00 this evening, John was moved from the ICU to the PCU (progressive care unit) -- the best elevator ride of my life!

Purposeful movement!

[Now that we are firmly past the crisis stage and safely into recovery, I'm adding some posts to fill in details from John's time in AtlantiCare to keep a record for later on for Nora.]

It's late in the evening -- about 10:00 -- and John's room is darkened. I'm in my "bed" (2 recliners pushed seat to seat to give me enough room to stretch out), under the covers, and reading one last article online, about to shut down my laptop and doze off. Out of the corner of my eye, I notice a red light flashing around the room. I look over at John and realize his right arm is moving!!! I jump up and ask him what he's doing, and he matter-of-factly (as if he hasn't just sustained a traumatic spinal cord injury that has caused near complete tetraplegia) answers, "Trying to see if I can scratch my nose." We have purposeful movement!!!

I made him repeat it for me a few times, then I went out into the hall to look for Jeremy, his nurse, or Matt, his PCA. Matt was at the ice machine, and so I shared the wonderful news with him that John was moving his arm to see if he could touch his nose. Matt was immediately excited and gave me the label "purposeful movement." He came back into John's room with me and I made John show off for Matt, then Matt went to find Jeremy and John repeated it for him. It's official -- he has purposeful movement!

It seems such a little thing, scratching your nose, but it's a giant leap forward for John. Movement is returning, at least to one limb.