Category: Magee

It’s been a busy 24 hours for Bob. He had his team care conference yesterday where they determined that his estimated length of stay is 6-8 more weeks at Magee. This is great news because he is already showing great improvements after just a week of intense therapy. What’s rough for me is that it is an “estimate”. He could show more progress more quickly and that time is shortened. The goal for him (right now) is for him to do 75% of his own care, walking, and transitioning from one place to another with 25% assistance by the time of discharge. He will also need 24/7 supervision when he leaves Magee.

One great thing is that he is cognitively gaining insight into what has happened. And because of that, his mood will decline the more enlightened he becomes. The doctors already have a plan in place to combat anxiety and depression without putting him on more meds for that. I am doing my best to reassure him and make him understand that his role as “provider” has not been usurped by me, that we absolutely want and need him home, but that at the same time we are doing alright without him and he needs time to heal. It is very hard to convey that to someone when there aren’t too many short term things that “stick”. We were talking about the accident and he seemed really with it, until he started to talk about the Corolla. He thought he had crashed the Corolla. That was the car we traded in for the Rav six years ago. Now in his defense, he did get into at least two accidents with the Corolla.

There are also three options for his care after Magee. While I struggle with what decision to make, I have to remember that so much has changed in 5 weeks and that even more can change in the next 5. So that decision is very temporarily on the back burner. And I am going to trust my gut and the professionals caring for us. Please pray that I make the right decision when the time comes.

Terry and I went up to see Bob tonight and I was very happily giving her a tour of the facility. There was a birthday party for one of the patients on the 6th floor tonight and it seemed so festive. Tomorrow we celebrate the one year anniversary of Michael’s adoption. When I tell Bob about it he says, “That’s nice. He’s such a good boy”. It’s hard for me not to be able to sit with him and recount every moment of that day. We’ll have more parties to look forward to in the future with our family intact.

I will be at Magee for at least part of the day for the next four days. It will be a whirlwind of activity but I can’t wait to see how he is doing with his therapies on Friday.

He is making more and more jokes and is smiling even more lately. I had him sign some paperwork tonight for me and after signing he said,”I didn’t even read it first. I don’t know what I signed”. I jokingly informed him that it was divorce paperwork. He said,”I’ll never divorce you. I love you.” He’s stuck with me too. For better or worse.

Shirts are in! Pretty good deal at $5 each.

I went into the city today with Mikey, Brittany, Joey, and the baby to visit Bob.  When we got there, the staff was able to set us up in a family room so that it was more like a living space than a hospital.  We played with a puzzle and with Mikey’s truck but Bob was very tired and we were only able spend about 30 minutes with him.  We spent the rest of the time on the 6th floor overlooking the city, soaking up the sun, and drawing Dada a picture for his room in their art therapy room.  Mikey was more relaxed with Bob and spent a great deal of the time with him in his lap or giving him hugs.  Bob was confused in conversation, convinced his brother, Ryan, was serving a years worth of jail time in Orlando.  He wasn’t sure what crime was committed but was sure he was behind bars.

We had a nice family lunch in Deptford and Rebecca watched Michael all afternoon/evening, while Brittany and Joey kept the baby so that I could run a few errands and get my nails done.  And then I was gifted with that pesky flat tire again.  And no amount of air could help it as there was a screw in it that was causing the slow leak and now the screw was missing.  I could drive about half a mile before it was completely deflated.  Thank you for AAA as I screamed over and over “BOY JOB”.  That’s a running joke in our house about responsibilities.  Any task that I don’t feel like doing is a “boy job” and therefore Bob’s responsibility.  But right now, everything is a “girl job”.  It’s been a long day, and I have a long week head with about three round trips to Philly, two overnights there, a number of appointments for both boys, a mini-celebration for Michael’s adoption anniversary, and a meeting to determine Bob’s estimated length of stay at Magee.  Pray for the meeting on Tuesday.  I will keep you in the loop after I get the call from the case manager with the results of the meeting. Thank you all for your love and support throughout this entire process.

First Dada kiss in over a month. Mikey was too scared to get close to Bob before today. And now he couldn’t get enough snuggles with daddy.

Family photo. Bob was too tired to keep his eyes open.

Working on a puzzle with Daddy.

Our whole crazy crew. Yep. There’s a sweet tiny baby under that blue blob. And almost a smile from Bob. Who you might notice is wearing a seatbelt.

Joe Joe and Mikey enjoying the view and the weather.

My friend, the flat tire.

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…

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.