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.
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.
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.
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.
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.