Disinfecting, Medicating and Changing Bandages: Oh My!

It’s Memorial Day Weekend; the kick off to summer at the shore. As I sit here in our bedroom, fireworks are blasting on the beach not 100 feet from our window. I kind of feel like I’m at Normandy Beach on D-Day! But then I hear the beach erupt in applause, laughter, screaming and music. I’m preeeeetty sure that wasn’t happening on D-Day.

Tonight’s fireworks are yet another strange, parallel-universe moment for Patrick and I; Atlantic City is celebrating the kick off to 12 glorious weeks of sun, sand and surf. Meanwhile, we are disinfecting pillow cases, changing bandages, keeping pain levels tolerable, and gently cleaning his incision. In actuality, it’s my poor Patrick’s naked head that looks like Normandy Beach.

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They did a great job following his original incision.

It’s strange, but time and its laws seem to continually circumvent me. TBI places you in a strange sort of holding pattern. Eighteen months ago, I was lifted into a whirlwind that only another living like me can understand. And so I mark the time passing only when I happen to look around and notice some tell-tale sign of change; all the trees in bloom, or the beach-goers crossing the street. For these reasons, I recognize its Memorial Day Weekend. Otherwise, I am unaware.

Patrick’s surgery went very well on Thursday. Frank and Stein have made themselves much at home under my boyfriends healing scalp. Ironically, his surgery was the easiest part of the whole process! Though he was finished with surgery and rolled into recovery at 10 a.m, by 7 p.m we were STILL waiting for a room! I did my best to raise just enough holy hell that I might finesse us a room, but not so much that I pissed off his rather kick-ass nurse. In the end, we spent the entire day and night in that little cubby. He was finally moved into a room at 4 a.m. It was exhausting.

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After 30+ hours of laying, I rotated him to his side to prevent pressure marks.

The most infuriating part of our surgery experience, was that nobody prepared in advance for the obvious outcome that would occur, when you place two rather large implants under a person’s skin who wears an already snug helmet. I saw this coming weeks in advance and did everything I could think of to prepare for it. I wrote emails, called doctors, and asked therapists. I was run ragged and given vague answers. Basically, we showed up for surgery with no solution at all. So as you can imagine, I was to unleash a bag of crazy on the nurse, when she came to me, with a flabbergasted look and said “Bad news. His helmet doesn’t fit now with the implants.” No shit, Sherlock. No, sheeeeeeet.

No helmet meant that his intended next-day discharge was put on hold until further notice. It also meant that they put Patrick on bed-rest. They wouldn’t let him get up to use the bathroom, stretch his legs, nothing. (He is still missing his skull cap on the right side of his brain). They wouldn’t even let him sit on the side of the bed to use a urinal. Now, I understand that safety is paramount, but I live and walk with Patrick every day. I am the expert here in this case, not them. And me and two others walking with him 50 feet? He would’ve been fine. Also, laying for 36 hours is really counterproductive when you are trying to relearn how to walk. If they’d have kept him multiple days, I would’ve insisted he walk, helmet be damned.

On top of this, they wanted to straight-cath my boyfriend because he wouldn’t consent to urinating the way they were demanding he did it (laying down). Being in hospitals always feels like waging war against insanity. Again, I raised just enough holy hell to get them to back off, but not so much that they kicked me out. LOL. He remained cath-free, and they consented to him sitting up on the side of the bed.

We sat until 3 p.m on Friday biting our nails, wondering if the mysterious helmet would ever arrive. When the guy from prosthetics finally came, he had never heard of our situation like ours. (This seemed to be a running theme. It’s almost like no TBI patient with missing skull has ever had a plate put in, had it taken out due to infection, needed expanders, had them put in, but still needed a helmet due to missing skull. Are we pioneers or something???) He told us that he didn’t think he had a helmet big enough, and would need to order it. He said it would come in WEDNESDAY, which meant staying in the hospital a week!!!!! But somehow, by the grace of God a XXL helmet appeared. And with out new, laughable ginormous helmet in our hands, we broke free from the hospital and never looked back.

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This thing is huge. And glaringly white. But we were so happy to see it.

 

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The multi-color piano socks, though.

Today, Patrick rocked his post-surgery recovery like the warrior that I already knew him to be.  He woke up this morning with a ton of swelling, which scared the shizzle out of me. I was on the phone to the doctor on call right away, but he assured me that swelling is common. Nonetheless, when I woke up and saw his face, I almost thought I’d pass out. Remember, this is out 2nd time around. Infection is our greatest fear. Nonetheless, he has kept an amazingly positive attitude.

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I didn’t think he could look any more bad-ass. I was wrong.

With 5 weeks of expansions, a final cranioplasty and another recovery pending… this will certainly be a different kind of summer for us than it will be for the rowdy party goers dancing on the beach below us. But we’ll be together, pushing through it, and trying to focus on the good. And when autumn comes, we will be at the start of a new beginning: Patrick’s head will be finally whole again, the helmet will be in the trash, and our eyes will be focused on whatever comes next.

 

Discussion

Comments

6 Comments

  1. You both keep my strength going for both my fiance, (the TBI Survivor,) and myself!!!! Your strength, yours and Patrick’s, makes me try harder and know I CAN be even stronger than I ever knew!!!! Please know, and express to your musical genius, that you are truly helping soI’ll of people..

    Please don’t stop. You two are keeping me hopeful and strong.

    Believe me, I know quite well, even after ten (long) weeks, that there will be good, bad, strong, wrap, hard and awesome times for us!

    Sorry for the novel, but I always think of you two… and it brings me great strength. Thank you!!! Loving light to you both!!!!!!

    • Anj Granieri

      Daneale…. thank you so much for your post. I am so touched and humbled to know that our story is giving you strength as a caregiver to your finance. Do not give up!!! You can do this. If you are taking time to research and read what others are going through, I guarantee you have it in you to do it. You are strong!! Just as strong as I am and Patrick is! I know its only been 10 weeks, but you will get through.. and so will we. We are all on different stages of the journey, but on the same one as well. I appreciate the novel. I appreciate every single comment and I hope you’ll comment gain.

  2. Pamela Miceli

    Rah-Rah Sis Boom Ba! Ya’ll know I’m your cheerleader! Patrick, you are the example in TBI world of a mighty warrior! And Anj….. My words could never touch the greatness that you are as caregiver.

    The one thing that I have noticed that we have in common is a positive outlook and laughter. They are the keys to opening the door to escape the insanity of this hectic, crazy, sometimes upside down life that we in this TBI recovery life all live. Recovery, the process that is really never ending once you have began the TBI journey. If it isn’t surgeries or infections or seizures its therapy. Even after therapy you recover from memory loss or moments of confusion, or anger, or relapse. It’s never really “over” is it?

    And then we all have each other. To support, encourage, relate, share information or just listen. As many TBI’s that there are we still live in a world where people act like this is the first TBI they have seen. What’s crazier is that those of us living it can automatically recognize others going through it. We see each other in public and recognize the pain and exertion we are all going through.

    Thank you for this blog Anj and Patrick. Thank you for sharing your journey so we can all learn. And if you help even one person along the way you have accomplished a tremendous thing. Xoxox

    • Anj Granieri

      Ah, Pam. You’re so awesome. You and your big boy Kev are certainly warriors yourselves!! A positive outlook and laugher is paramount I have learned. Sounds like you have as well. Its what blasts opens our hearts and allows the light to come in. Gratitude does as well. And you’re equally correct when you say that recovery is never ending. It can be disheartening to think that we recover for the rest of our lives… but then… i think… isn’t everyone recovering from something? heartbreak? addiction? cancer? loss? In that way, TBI connects us not only to all other TBI warriors but to all of humankind. Thank you so much for reading and commenting and letting us come into your lives. xo

  3. I love hearing (and reading) stories of such strength in overcoming “weakness”. I had that nifty helmet on when I had my aneurysm. I always told people I was pretty hard headed then…and now that it is off, I am not as hard headed as I used to be 😉
    It was hard at times…but so worth it in the end. People would stare. I would stare back. If they has questions…I would share my story proudly and let them know what I all survived. Sometimes I really inspired them!! I did lose a lot of short term memory but I am working on it. Never give up. There is that quote “If at first you don’t succeed, try, try again.” That can be one for him 🙂 Been one for me!!!
    It is weird right now cause I am back at the hospital where I had my brain surgery. Other things are going on. Just feels like I am back to show that I made it. Will pray for Patrick that he will get to this feeling as well!

    • Anj Granieri

      Hey there Katey. Thanks so much for commenting on my post 🙂 People definitely stare at us, and at patrick especially, but he stares right back for sure… and he is always open and eager to share what he’s been through with those that he meets. Its certainly a tough road, no doubt. I am sorry to hear you are back in the hospital…. i hope by now you are out! Thank you for your prayers and I hope you will right again.

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