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.