Categories
Brain Injury Magee

Club Level…

I hit a wall at 4 am this morning. And I wasn’t sure I was going to make it over this obstacle. I’ve been running on adrenaline and prayers for the past 7 1/2 weeks and the exhaustion caught up with me. The tiny baby was awake and I wasn’t sure I was going to make it through his bottle without completely losing it. But I did. And when my alarm went off at 6, I rallied. Had a mini breakdown at work when I first got there, but I knew our first day of PARCC testing and my probability activities for the week were going to be hits. Hugs and cupcakes from coworkers worked as fuel for my soul today.

I ran what felt like a million errands after work today (it was really only 7 stops) before I got to the hospital. But Bob and I talked on the ride in. He said he was happy to finally hear from me and I told him that we had spoken three times already throughout the day. He said he didn’t remember and he said that made him feel bad about himself. So then I felt badly. But, he did remember that I told him he would have a follow up with his neurologist in EHT next week. So that was huge.

I was really concerned when he said he didn’t remember the details of how Michael came to live with us and information about his birth family. That should be long term memory. I reminded him of the history and I think that he is blocking that out because it is painful to think about that knowing how much we adore Mikey. So there are going to be ups and downs and I realize that I’m not totally prepared for any back sliding. More than once Bob told me that he “doesn’t like not feeling sharp”.

I called the concierge at the hospital, Robin, who has been beyond helpful. He job is to make us all more comfortable. She had a white noise machine put in Bob’s room a few weeks ago and tonight she was preparing to deliver a TV with DVD player for us to watch Stepbrothers. I also asked if she could bring us Pat’s steaks tomorrow for lunch. Her response, “whiz wit?” ABSOLUTELY! It’s a surprise for Bob. I actually told him tonight but I still think it will be a surprise. We’re celebrating our “date-aversary” a few days early.

When I got to the fourth floor, Bob had a party in his room. His brother, Kevin, and cousins, Joe and Johnny, were visiting. He was video chatting with his brother, Ryan. I took everyone to the sixth floor to give a tour and get out of his room for a few minutes. Joe commented, “You really want to leave this place? It’s beautiful!” And it is. But I also know my baby wants to come home. And June 12-19 seems SO far away to be discharged for him.

I also got a text from our sweet neighbor, Elisabeth, that my fur baby, Squalie, is doing well with her. He is on her lap anytime she sits down. Just like Brittany, Joey, and I talk about the baby being “broken” when he is held for an entire weekend, my kitty cat will come home broken for sure! She is spoiling him and I appreciate it and the Squals is loving every second.

Bob was going to get ready for bed so he said “you do you” and sent me off to check in to the hotel across the street. My friend, Michael, was working tonight and he has checked me in a few times before. We had previously discussed that boys named Michael are ornery and he has shared pictures of his adorable niece. And tonight he took care of us. He upgraded us to the club level which is free apps and drinks for happy hour and free breakfast in the morning. He told me to hurry up and go grab a drink and snack before they closed.

I can’t go back to a “regular” room now. I’m spoiled.

The gorgeous view from my room tonight. I told Bob about my four star treatment and he asked if we needed to switch our rewards program from Marriott to Sheraton. Ha!

I went back to the hospital and had a great time laughing at Stepbrothers with my hubs. He was near tears at a few points.

“Did we just become best friends? Yep. Do you wanna do karate in the garage? Yep.”

He loves that movie. I stayed an hour past visiting hours and Bob was afraid I would get in trouble. I didn’t. I have made my way back to the hotel and have continued this evening’s laugh track by watching Impractical Jokers.

I’m excited about therapy tomorrow and for my mom and Michael to come up and spend the night tomorrow. And to go back in the pool since I grabbed my little fish a swim vest. πŸ™„

Categories
Brain Injury Magee

Temporary and Permanent…

The report from the urinalysis is that Bob does in fact have another urinary tract infection. So back on the meds he goes. He sounded absolutely terrible to me on the phone today and I was tempted more than a few times to head to PA early to make sure he was ok. His nurses, Melissa and Tedra, do a great job keeping me informed (and leaving me alone when there is nothing to report). I appreciate both ends of that. I have plenty of other things to tackle on a daily basis.

Bob also made it through all three of his therapies today even with being uncomfortable. I honestly thought he would have just wanted to lay in bed and rest. But he’s a fighter. (I would have opted for rest)

I was very excited to get out there today and visit with him and even more happy that it was Tuesday, which is open greenhouse night with Jeanette. She offered us a few projects to choose from. We worked on a temporary one as well as a more permanent creation.

Quite a juxtaposition when thinking about it and looking at the art we made in the greenhouse side by side. Bob decided to create for me a vase of fresh cut flowers and arrange them himself. It means more to me than any flowers he has ever had sent to me. Though I was terrified that he was going to snip the meaty part of his palm when he wielded the snippers to trim the stems.

He told me that he picked the purple “Mother’s Day” tag because it is my favorite color. But cut flowers, while lovely, are temporary.

We then worked on a stepping stone to put in our yard at home. Bob had to add the concrete to the mold and we worked together the fill it with colorful stones and shards of glass. Bob decided that he wanted them all to be blue. And it looks beautiful.

I’ll be able to take it home with me in a few days. Hopefully this will be a more permanent reminder of this season of our lives.

It’s been seven weeks today since the accident. Seven weeks ago I was asked to sign for my husband’s personal effects by a hospital staff member. 49 days ago I was handed his watch, phone/wallet, and wedding band. I sat by his bedside at this time almost two months ago in shock and disbelief. These feelings of fear, imbalance, and exhaustion in our lives will be temporary. But the changes in our outlooks are permanent.

Permanent are the people who have been by our sides helping meet our needs where we are. I continue to be amazed at how people react to us and our temporary situation. The texts started pouring in this morning about how to help my elbow heal. And then one of my students brought in an elbow brace from him mom who read the blog and ran out to CVS just for me this morning (it has felt better with the brace on all day~Trish, you are fantastic).

Permanent is the sound of Holly’s voice on the video of when Bob first woke up from his temporary unconscious state to have a conversation with us. I called Holly tonight to thank her for temporarily caring for Bob because she has made a permanent impact on our lives. Bob often tells me that he reads the note she left for him in the visitor book we have taken with us to all of the hospitals.

I am still so grateful for all of you and the power of your prayers. Over dinner tonight with my dear friend, Suzanne, she shared how she asked a group at church to pray for my husband. No names were used and afterward, a friend of hers approached her and said that the situation sounds very familiar to one in which her accountant asked her to pray. Again, with no names. They both pieced together that the prayer requests were one and the same. Suzanne’s friend, Bob, and I have all met before and we use the same accountant. It is a small world.

Please keep your prayers coming. While it might be temporary for you to beseech God to help Bob, the effects of your prayers are having a permanent impact on our lives.

Much love to you all…Karen

Categories
Brain Injury Magee

Kentucky…

Bob had a strong start to therapy on Monday. His speech therapists, Ashley and Alyssa, arranged for the therapy dog, Kentucky, to have a session with him.

Bob had to focus on remembering multiple commands to give Kentucky as well as facts about the adorable canine. Bob later told me that Kentucky knows over 100 commands.

Nope. No way. Not getting a dog anytime soon. I sent Ashley an email asking her to let Bob know that. She said that Bob had already talked about how he was going to convince me to get a dog. Ashley very kindly redirected him and they had a conversation about how now would not be the best time to add a four legged friend to our household. I did say, however, that I would allow him to bring Kentucky home with him.

Bob wasn’t really himself for the second part of our visit on Sunday or on the phone Monday. My mom and dad met me in Deptford so that they could take Mikey for the rest of the day and I could spend time with Bob. We played SkipBo and had cheesesteaks for dinner with his friend, Sam. He had a very low grade temp (99.2) in the late afternoon and his left arm and hand were shaking during dinner. He was complaining of being cold. I was worried. I checked in on him a few times Monday over the phone and he just didn’t sound right to me. He was mixing up days that people had visited or thought that people who live multiple states away had been by. I haven’t heard talk like that in a few days. I learned that he didn’t sleep well from Sunday to Monday and that they were adding a new med to help with the bladder issues. He also had a chest X-ray and additional urinalysis this afternoon after he was too wiped out to finish his OT with Brian. Those results come back Tuesday. He also has another conference on his progress today.

On another note, I’ve been having pain in my right elbow for weeks now. Brittany has a similar pain in her shoulder which has been described to her as “single mother chicken nugget shoulder”. You’re the only one in the car handing things to the kids in the back. I must have “single mother choo choo, tiger, binky, tissue, apple juice elbow”. After speaking with the resident MD (Joey) and checking google, it’s probably tendonitis, aka tennis elbow from overuse and repeated strain. I’m sure picking up a car seat, Michael, or dragging luggage back and forth across a distance at least twice a week isn’t helping. And the protocol is rest and ice. So this was my text exchange with Joey after I was *supposed* to go to bed at 9:30 since my tiny baby friend likes to party in the middle of the night. Yes, it is 3:30 am. (We just wrapped up the rave.) I had also been up waiting for a call from Bob’s nurse because I was concerned about him and wondered if I needed to rush out to Philly to check on/advocate for him.

So that Joe Joe got me a little teary. Bob talked to Joey on the phone tonight and thanked him for taking all of us in. Joey said that they love the kids like their own. (I’m just part of the package). We are beyond blessed to be surrounded by amazing friends who have become family and now our landlords. We often discuss which one of the three of us would be evicted first. The consensus is usually Michael. He can be a stinker. C’mon, he’s cute and sweet, but he’s TWO.

Please pray for healing of Bob’s brain as well as his bladder issues. I KNOW your prayers are working to heal him and make him whole. He will see a urologist in the next couple of weeks. Pray for my elbow too if you can sneak that one in there. Thank you all!

Love, Karen and Bob xo

Categories
Brain Injury Magee

Time…

The last 24+ hours have been busy but good all around (or I am choosing to remember all of the good). Bob was upgraded to have a full diet which means he can eat in the cafeteria with me (and only me. I’m the only one who can take him – he reminds me). So after we met with tiny baby’s law guardian yesterday evening, Mikey and I high tailed it to Philly. We stopped in Deptford for McDonalds and a happy meal tiger (his new BFF) and grabbed a few things from Target for Daddy. We were surprising Daddy by being here all weekend when it wasn’t previously planned. I am also feeling guilty because I don’t think we will see him next weekend except for a quick trip up and back (if we’re lucky).

So we dropped drinks, toiletries, and clean clothes to Bob last night and checked into the hotel late. After completing our night time routine, I enjoyed a shower beer. Don’t knock it till you try it.

Mikey and I had a yummy breakfast where he terrified everyone with his tiger and then we headed to the pool.

This kid is Out. Of. Control. Thanks to his Pop Pop, he no longer has any fear of the water. Jumping in off the side. No hands and happily slipping under the chlorinated bath water. I’m terrified. He definitely needs swim lessons ASAP (in my spare time).

We made our way to Magee and took Dada outside on the 6th floor and played with our zoo train, the tiger and a fountain that Michael insisted on touching. Mikey also was trying to fix Dada’s wheelchair.

We ate lunch with Bob in the cafeteria. Our first family meal in almost 7 weeks. Insane for me to process that. And it was our typical crazy meal, so it was nice to see that nothing had changed. Michael and I headed back to the hotel to take naps and Bob had company from Aunt Sue, Uncle John, and his cousin Johnny. His cousin Kathy also came to visit and was still there when Mikey and I came back a little after 4.

We all went to the roof again to give Kathy a tour and went to dinner. Bob shared his spaghetti with Michael, who eats like he’s Cookie Monster.

This kid. You can see the pasta that I’m catching in my hand. *shudder*. We played for a bit in the family room and then headed back to the hotel.

So Mikey is asleep for the night and I am blogging, eating Cheetos, and am about to read a book that I started yesterday. Weird that I have so little time but I am choosing to read. Not watch tv. Not play a game on my phone. But read. I think I need the escape.

Michael and I almost crashed a couple of events tonight as an escape. The first was a bachelorette party as we were headed to the hospital because the group had an inflatable item and I believe their room is right down the hall from us (I’m sure we’ll know in the middle of the night). And the second was a prom. We saw all of the couples arriving as we came back from the hospital. Mikey yelled, “Anna, Elsa” as the girls walked by in their gowns. So it’s odd how life just keeps going on. I feel like one of my seventh graders who wonders how we were able to do anything when they were out for a day. Shouldn’t the classroom activities just pause? Wait for them to return? Shouldn’t everything from March 20 just stop for a little while until we are back to baseline? I say “we” because Mikey, tiny baby, and I are all on this journey (poor Brittany and Joey too). It feels so odd to know that the accident was caused by ice on the road. On March 20. And that my birthday was a “snow day” this year. And that it almost hit 90 degrees yesterday. Those temps feel like they are seasons apart (and they are) but it is really only just shy of 7 weeks since the accident.

So time is just a wild thing for me now. Moving so slowly yet quickly at the same time. Mikey is getting taller and his language is exploding. Zoom. Bob is still in the hospital and not home. Turtle crawl. The school year is almost over. Zip. Could be a year before Bob is back to where he was. Slow Baywatch run. We’ve been at Brittany and Joey’s for about 40 days. Flash. I feel like there is no end in sight to this process. Sloth.

Whether counting the seconds or wishing I could pause time, I am looking forward to spending precious moments with Mikey and Bob tomorrow. I am also hoping to take my husband down in a ferocious “to the death” Uno match. Wish me luck. I think I might need it.

Categories
Brain Injury Magee

Orange Tag = Freedom…

I spent the day with Bob at his therapies. It is always incredible to see how far he has progressed in a short time as well as sobering to see just how much further he needs to go to reach baseline.

We started the day with speech therapy and Ashley and Alyssa. Bob worked on word association where he was given three words and asked to recall one word that associates all three. For example: branch, leaves, roots. That one is tree. Easy, right? Nope.

“tall, city, building”. I cried foul. We have no frame of reference as we are country mice. It took ME a minute to come up with skyscraper.

“white, mouth, chew”. Bob said horseradish. I say he gets credit. It’s white. And you chew it in your mouth. His caseworker, Trisha, later on in the day said “gum”. The “correct” answer was teeth. Don’t let me lead you astray. He did an amazing job with all of the other ones he was given. So well that we moved on to another game.

The next one was called “Rhyme Out”. You were given three clues and asked to produce three rhyming words that matched the clues. Example: A home. A rodent. A girl’s dressy shirt. (house, mouse, blouse). This task was pretty tricky, but we were able to do it with a little help. By we, I mean me too. I had to stifle my highly competitive side because I REALLY wanted to blurt out answers.

The best part of my day was next. ORANGE. TAG. Bob is no longer a member of the red tag club. WE CAN LEAVE THE FLOOR! This means cafeteria for music. This means 6th floor for outdoors and movie nights. This is a step towards independence. I was trained and my name is on the board to be able to wander around the building with Bob. So. Exciting.

So as soon as that tag was secured, we high tailed it to the elevator. We wandered the 6th floor gardens and therapy rooms. He remembered that he had visited the roof yesterday and had counted the American flags on the tops of the buildings. I had never noticed them before. And I was super thrilled that he remembered something new for 24 hours!

Bob was very impressed with the decision Suzie and I made to send him to Magee. He said he wouldn’t know where to send me if the roles were reversed. I said, “Simple. Decision has already been made. Send me to Magee”.

During PT with Brent and Ranit, Bob worked on shifting his weight from side to side to tap his foot out in front of himself on a blue circle and then a low stool. Both the hubs and I commented on how amazing the mechanics are of walking. We all take it for granted because we just “do it”. But you have to shift your weight to one leg to be able to lift the other and place it in the direction you want to go. And back and forth. Incredible. And then Bob walked around the gym. Literally. The ENTIRE gym. Just holding hands with Brent and Ranit. He is improving physically at an amazing rate.

First walk of the day. I had to jump out of the way and he kept going.

At the end of this next video you hear me say “there’s not much further to go” but he did. In a huge circle all around the gym.

We parted ways for lunch and I listened to a musical performance while I ate and chatted with my stalker friend, Keith. He just wanted to check on me and is going to come and see Bob and I the next time I am there for a day.

The next hour or so was pretty fun. I gave Bob a haircut with the trimmer I bought him a few weeks ago. Just a buzz and I shaped up his neck. His head injury must be pretty bad because he said I could cut his hair all the time now.

Then we wandered over to the day room to play a few hands of Uno. It felt great to sit with him and do something that we normally like to do. Bob said “I just miss being with you all the time. You’re my best friend and I just miss you”. He also continues to tell me how much better than him I am. And how proud he is of me. And that he made a good choice when he decided to marry me. I really need to start recording these conversations.

Back to Uno…first game, he beat me. Not as in “I let him win because he has TBI”. Nope. Legitimately. HE BEAT ME. Kinda crushed my spirit a little. So the next game I hit him with a double “draw 2” combo followed by a “draw 4 wild”. I won that hand and he described my playing style as “ruthless”. Yep. I am.

Crushing me with his final discard.

OT with Brian was good. Bob worked on standing up, sitting down, scooting, and had the second part of his vision test. He is doing well in OT and may soon progress to a different type of wheelchair so that he can propel himself. I started to doze off again, but I didn’t get caught this time.

Bob called me a half dozen times tonight and I almost lost it one of the times. I was taking both boys to Target to buy Bob some more gym type shorts as well as a few toiletries. God bless Brittany for meeting me there. But as Bob and I talked on the way home, the baby was crying and Michael had a fire truck that is so loud I always think I’m about to be pulled over. And it was just too much. And I’m tired. I’m always tired. Because even when I “take some time for me” there are things to do. A Progressive phone call to discuss his benefits with the insurance claim. That are only coming after 6 hours of leg work on my part. A phone call from the baby’s law guardian because court is Monday and maybe she should come and see him tomorrow for a report. (old Karen would have been blowing her phone up and demanding a visit for the last month). Nothing like the last minute. “Nah, we don’t have plans. Come when it’s convenient for you.” While I’m trying to book the hotel for the weekend to take Mikey up to see Bob and surprise him with longer visits than normal. And I have to go to the pediatrician to pick up paperwork for a meeting on Monday afternoon for tiny baby. And pack. And wash Bob’s clothes. And I have the beginning of a stye. So Bob’s phone calls to sing my praises in the middle of a baby meltdown we’re not received well.

But what broke my heart tonight was Michael really breaking down and crying for his Dada. Real tears. Nearly inconsolable. Until Joey gave him a tiny rock em sock em robot. It was the saddest I’ve seen Mikey in a long time. We’ll see dada this weekend and be able to play with him upstairs and outside.

I also want to thank Alyssa and Brent. Today was my last time seeing them because they are both graduating over the next week. You are both already amazing therapists and will excel wherever you are employed. You will both continue to make a difference in people’s lives as you have made a difference in my family. Bob always says incredible things about you both and tells me how you are willing to try anything he asks. We will both miss you.

Please keep praying for a miracle. We need it. Bob needs it. If you ever want to call and talk to him, send me a message or email and I will give you his number. Thank you all for your love and support.