Categories
Brain Injury Magee

38 Pegs, Onions, and Puke…

I went with Bob to his therapy today at Magee. Speech was first and I spent a little bit of time there validating information that he has been sharing with his speech therapist, Ashley. The majority of the details of our life that she told me he had been telling her for the past couple days were actually true. So that was reassuring. Our next stop was Physical Therapy. I watched Ranit work to adjust his wheelchair so that he is more comfortable.  I watched Brent stretch Bob and work on rolling. We didn’t get to do any seated activities today. He seemed more comfortable in the adjusted wheelchair already.

After he had completed two hours of therapy, he is allowed about an hour to rest and get some nursing care before lunch. I took this opportunity to sit down with Trisha, his case manager, to talk about his schedule and us determining a set time to talk each week. I went out to eat while he was having his lunch. After our bellies were full and everyone needed another nap, it was time for Occupational Therapy. This was probably the hardest part of the day for me. I watched Bob look at a picture of a 10 x 6 rectangle that was made up of purple dots. There were 28 pegs that made up the rectangle. Brian (his OT) asked Bob to pull the purple pegs out of a tub and place them in a pegboard in the same shape. Brian did help Bob a few times by sorting out the purple ones and putting them on the table for him. I was amazed by how many different aspects this task focused on. He was working on coordination of his body, hand-eye coordination, fine motor skills, trunk control, maintaining midline, reaching out, forward, and to the side, using his core to pull him one way or another, and communicating the entire time. He put the purple pegs in the rectangle that Brian had laying flat on the table just within his reach. Then Brian moved the peg board up on a stand so that Bob had to reach his arm up instead of out. This task called for 10 red pegs in a line. It took my husband 60 minutes to place 38 pegs. SIXTY MINUTES. I cried a little after about the fourth peg and then sucked it up.

I was so tired that I did doze off at around peg number 32. Bob caught me napping. He said, “Karen, you’re falling asleep! I need you to wake up and support me!”. Says the man who got a rest break after every three pegs. We joked during the session and Brian talked about hobbies and the Eagle’s schedule for the fall. Overall, it was really hard to watch.  HIs left side is also significantly weaker than the right.

Brian told him that all the leaning and reaching forward was going to work on his abs for his summer body. Bob’s response was “I don’t have any abs. I have a dad bod.” Another patient was working on meal preparation in the kitchen. There was a strong odor wafting into the gym, and I just asked Bob what the smell was.  He immediately answered “Onions”.  This made me happy as I know sense of smell and taste are often affected with TBI. Brian asked him what he would cook with onions.

Bob:  garlic

Brian:  peppers

Bob:  chicken

I was also happy to hear all of this come out.

Mikey and I went to Glow Theater at Northfield tonight.  We had a ball and loved the black light.  “EE more gain?”  Means to do it again. Then back at home, he had 4 medications and his milkshake (Pediasure) while he got his hot compress for his eye. He drank almost all of the milk and then was on his second bite of cookie when everything he had eaten in the past four hours came right back out and all over me.  A wise parent once told me that when your kid pukes, you take it, you pull them close to you and let them vomit on you.  Its easier than cleaning rugs or furniture. He was over full, and the cookie was the tipping point.  Once he got in a hot shower, he was fine.  I tried to scald my skin off once I got in the shower because I was so gross.  TiTi leapt into action and I learned that Joe Joe is very close to being a sympathy puker.

Bob has another busy therapy day tomorrow as a make up day for starting midweek and we’re planning to go as a family on Sunday to visit Dada.

One last funny conversation:

Near the end of PT we were talking about where he was. He said Magee because he was in a car accident.  Then he said Magee was in Somers Point.  Brent and I reminded him that he was in Philadelphia and that they are known for cheesesteaks.  I told him as soon as he’s up for it, I will bring him a Philly cheesesteak.

Karen:  Where should I get your steak from?

Bob: Doesn’t matter

K:  OK, then I will get it from Geno’s

B: (twists up his face in horror) You’ll go to Pat’s.

And by the way, the concierge at the hospital will drive me to Passayunk Avenue and back so that I can buy Bob a cheesesteak. Pretty amazing service here…

Categories
Brain Injury Magee

Disturbed and Disloyal

So I got three calls from Magee today. One that his room was moved for a better roommate match. Two to confirm hotel reservations for me. Three to let me know that he has an infection in his urine. And what they’re doing to remedy that (straight catheter and antibiotics because he isn’t peeing on his own since they removed the Foley catheter). I’m raw and real here. Sorry. So I’m thrilled for the constant updates from the staff and keeping me in the loop, but it’s still overwhelming. It’s just a ton of information.

So I came to Philly tonight to visit with the hubs. Tim came to visit shortly after I arrived and was able to keep his giggling to a minimum with the crazy stuff Bob says. I wasn’t. And my blue eyed boyfriend (sorry Suze) took me out for dinner. He’s a keeper.

I am also staying overnight at a local hotel and get to go to his therapies tomorrow. It’s a Sheraton. *shudder* We are LOYAL Marriott customers. Marriott is home. But Sheraton is $20 due to a grant from Magee because we are so far away. So I’m disloyal. And sick about it.

And I’m disturbed. Because while I’m normally extremely independent (movies, dinners out, and sight seeing in a new city by myself) I don’t care for hotels by myself. So I find myself in the hotel lobby bar drinking beer.

I have a nice view from my room. And Mikey will love the pool when he comes to stay with me here next week. But it’s still weird to be by myself. So I seek solace in the hotel bar. People. Sixers. Beer.

When I saw Bob tonight he was a new man. Sitting upright in his wheelchair with clothes on! He still yells “hello!”. And the staff now responds, “Is it me you’re looking for?”. And he hollered for awhile about something being in his butt. Yep. Your spine. He was convinced that it was a wire, keyboard, lightbulb.

He is well cared for. This is the best place for him. It’s just hard to imagine what life will look like a week from now. A month from now. Six months from now. Tomorrow is a month since the accident. It’s hard for me. And it’s hard for Mikey.

My views…

How they transfer Bob from wheelchair to bed and back.

Categories
Brain Injury Magee

No gloves but lots of guilt…

One thing I didn’t share about yesterday was that at Magee, the gloves and gown are no longer needed to visit with Bob. It was really nice to be able to actually touch his arms, hands, and face with my hands yesterday.

But I didn’t make the trip today to visit with him. It’s the first day since the accident that I haven’t seen him. And I feel sick about it. I did get a full report (and I mean full) from his case manager earlier today with detailed statistics about what he was and was not able to do in OT, PT, and Speech. It was extremely overwhelming and a bit humbling to realize just how far he needs to go before he’s back at baseline.

A few times in ICU, I actually thought that if I gave him a big ole smooch, he would wake up (thanks fairy tales). Or that I would walk in and he would be sitting up and eating jello. Now, I guess I just hoped the report would be that he was up and walking. But the reality is that he doesn’t know what day it is, can’t thread his arms through a shirt, and can’t stay upright on his own without help. So I’m sad. And I feel awful that I didn’t see him tonight. Mikey and I did call his room and he said, “Hi. What’s up?” after being handed the phone by his 1:1 aide like nothing had ever changed.

But it has. And it’s just sad. I’m sad. And Mikey knows it. He hugs me more. Kisses me more. And will often rush to my side when he sees me get teary. I try not to cry any more in front of him but it still happens. And I just miss Bob. My Bob.

The accident happened the day before my birthday. I was wondering if he had bought me anything or planned an experience. Ferg said she remembered taking to him about it earlier at work on the day of the accident and that she thought it was an experience. I was going through mail tonight and looking at bills. On his credit card was a charge for spa finder that was enough for us both to get massages. He probably would have scheduled Brittany to take the kids for the day or overnight and we would have been pampered, had a wonderful dinner, and spent the night in AC. That’s my guess. I’m not sure I’ll ever know. I’m not sure he’ll ever remember what he was planning because that was a short term memory.

Please keep praying for him and our family.

Much love, Karen

One of last year’s birthday gifts. Delivered to work.

And our birthday date last year. He actually said he enjoyed it and would do it again. The art is hanging in our room now.

Categories
Acuity Brain Injury Magee

The only way to go is up…

What an amazing day! What started out with uncertainty is ending up fantastically! (be prepared for a boat load of exclamation points) I got word in the late morning that he was being discharged from Acuity and admitted to Magee. I have only been here for a few hours but have been moved to tears on more than a few occasions.

The building and staff have so much to offer us as a family with our healing. Everyone here is just as concerned about me as they are about Bob. He had dinner and really enjoyed his pudding tonight. He asked for ice cream and wouldn’t you know, they brought him ice cream! The doctors cognitive assessment was sooo much more intense. Count backwards by three’s from 20. Remember these three words (ball, piano, cardinal) and I’ll ask you to tell me them in a few minutes. Name as many animals as you can in a minute. What day of the week is it? What month is it? What were those three words I told you before? (he said giraffe) I also learned that I need to not always correct him when he gives wrong information, but redirect him instead. Whoops. I’ve messed up a bit in the last week and a half. But I didn’t know any better. It just frustrates him and his brain to feel like he has bad information.

The staff are intensely caring for his wounds and any scrapes and cuts he has. He has a wheelchair and has all of his clothes moved in. PANTS TOMORROW! I have met his case manager, his physician and resident, and his OT. Every one seems to be on the top of their game. And I also met the horticulture therapist, Jeanette.

It was open greenhouse tonight and she asked me to come up. I thought I was going to be moving bags of soil and planting flowers to just help out in the room. But no! I got to repot a few houseplants and I can take this to keep in Bob’s room!

Our tour guide, Ruth, came into Bob’s room to check on him and me. One of my student’s uncles works here (Keith) and I caught up to him in the parking lot. He was making sure I was ok and that Bob was being taken care of. It’s been an overwhelming day but with so many amazing things that happened and people to guide us along.

Being here is an unbelievable blessing. For Bob. For me. And for our family. Oh! I almost forgot. When I first got here today, I asked Bob if he remembered the foster baby we (and our village) are caring for and he called him by name!

Thank you for your continued prayers. I’m not thrilled to be on this journey, but I’m glad that the ride has brought us here and that you all are in the car with me.

Karen and Bob xoxo

Today’s theme:

Selfie on the sixth floor

The view from the sixth floor

Me trying to cultivate a green thumb

I was having so much fun

My finished repotting project for Bob’s room

Categories
Acuity Brain Injury

The peg that broke the camel’s back…

I wasn’t sure how to title this today. First it was going to be something about the peg. Then it was going to be something about my oh so incredibly sweet neighbors. Then it was going to change to my experience with Enterprise. THEN it was going to change to my meltdowns with my car. And finally, I was going to change it to how aggravated I was with my husband and how it melted away with a smirk and a smile. I went with the peg since that was how my day with Bob started…

Here are the events of today in a not so quick summary.  I called the hospital around 11 am to check in on how he was doing and to see how he was progressing with the move to Magee for tomorrow. I was informed by the case manager that Bob had removed his peg all by himself in the middle of the night. This involves him ripping his feeding tube (which was held in place by a balloon) out through the tiny incision in his stomach. That small hole is now a much larger hole then it was to begin with because the balloon was still inflated when it came out. He did inform me tonight that it was painful.  REALLY?  Ya think???

Now, since he no longer has a feeding tube in place, he must be placed on a diet of “real” food because he’s not getting the liquid nourishment that he was before.

“That’s great for him!” you think to yourself.  “This means progress!” But instead, it means that Magee really wants him to be off of the peg for two days before they admit him.  Its a precautionary thing to ensure that he’s not aspirating any food and isn’t running a fever.  So right now (as of 5 pm Monday), his move to Magee is temporarily on a small hold.

They would like to see how he does with dinner tonight and breakfast tomorrow morning as well as how he maintains his body temperature overnight.  After breakfast, his case manager at Acuity will contact the nurse liaison at Magee to report to her on his progress and hopefully at that point, the nurse liaison will give him the OK to be admitted to Magee.  So the peg issue doesn’t mean that tomorrow is a no, it just means that we have to wait and see.

I also had to return my sweet rental today.  I have some amazing neighbors. Elisabeth swooped in and was able help me move everything out of the rental car and into the Rav before following me to Enterprise in Hammonton. My new friend Jimmy at Enterprise really took care of me.  THIS was one high point of today.  The car was originally $1.95 a day out of pocket expense.  Jimmy got it down to $.14 the day I picked it up and since the tax rate changed, it was down to four cents per day.  So for 24 days of a rental, I would’ve paid $.96.

Jimmy decided that I had over filled the gas tank from when I picked it up and gave me a $.96 fuel credit. So my super nice Jeep Grand Cherokee Limited was at no cost to me for the 24 blissful days that we drove around in it.

Then I returned to the house and started the Rav.  As I began to pull away, I realized that I had a flat tire.  I called my other neighbors, Ann and Billy to help me out.  Billy filled tires while Ann and I went into the house to gather a few more things that I needed.  I talked and laughed with them for a while sharing Bob stories from the hospital that are just too inappropriate to post. Then, as they were about to pull away, my car wouldn’t start because the battery was dead since I left the lights on four 6 minutes. I frantically waved Ann and Billy down and Billy jumped the Rav and I was on my way to the hospital.

I was glad that when I got to the hospital tonight that Terry, Mike, and Bob’s Aunt Sue were all there. I was freaking out at my husband. Screaming and crying at him because I was just so frustrated with the way today had gone.  I am so concerned about what will happen tomorrow because of the choices he made to pull the peg out. Even though I was steaming, steaming, steaming mad at Bob, all it took was for him to ask his Aunt Sue and Terry “What did I do? Why is she so mad?” Followed by “She’s in rare form” and “Marriage is really hard” to make me laugh at least a little bit. I don’t want to take out my frustration on him but sometimes that’s the only person that ever gets it. He’s not yet all together there to be mad as hell along with me at whomever or whatever has irked me.

So I’m not sure if it was the peg. Or the car tire. Or the car battery. Or Magee. Or Acuity. Or the hour long phone call with my car insurance. Or the uncertainty about tomorrow. Or just this whole situation that broke this camel’s back today.

We both usually take out our anger and irritation on each other because we both get it and we’ll always love each other. And even if we snap at those we’re closest to, they’ll always be there for us. And for me that’s Bob and for Bob, that’s me.  He’s getting there, to that point when he will “get it” but after all of this, I want us to be a little kinder and gentler to each other.

I want to thank all of you who have been so kind and gentle to me, Bob, Michael and our foster son, Baby J over the past four weeks.  I have a plan to write thank you cards to everyone who has sent us a meal, watched kids, driven kids all over, driven me all over, sent gift cards or money to help us, talked me off a ledge, texted or called to check on me, taken me out to take my mind off of this mess, jumped a car, or filled a flat tire.  My community of friends, coworkers and family have been amazing.  Thank you for hanging in there through this extra long post.  It’s been an extra long day.  Please hug those you love a little extra tonight.