wiggle your toes

In ALL, ILLNESS by Stephanie Klein27 Comments

Phil couldn’t wiggle his toes. The entire right side of his body was immobilized. He had no peripheral vision in his right eye. When the doctors lifted his arm in the air, he was unable to hold it there. He had absolutely no feelings or control, couldn’t move any part of his right side. When he spoke, he was unintelligible. That was the hardest thing for me to see, his trying to talk. It was a sound that told you right away just how wrong things were. He couldn’t tell us what month it was.

I had dropped the kids off at camp, a field trip at an amusement park. It was a quick drop off, and we’d been running late that morning. I’d forgotten to tell them to wear their camp shirts. I hadn’t showered, brushed, or deodorized.  Without a lick of makeup, I was wearing my pajamas: a superman tank top and running shorts. I was in the car, on my way home to address all this when my father called.

He asked where the kids were, and I told him they were good until 3pm, when I’d need to pick them up.

“Okay, well, Phil is in the hospital. He fell off his chair at work. They think he’s having a stroke.”

Everything stopped for me then. I was driving, looking at the road, but also somehow not seeing it, as if I were on autopilot. What went through my mind in that very moment was, wait, which hospital am I going to again? Where am I? Wait. What’s happening? I looked to find the hazard lights on my dash, but couldn’t find it. I switched into the HOV lane and thought, I’d better be safe. They can’t lose me too.

I had to call my father back to ask him again which hospital, as if my brain hadn’t digested the information when he’d first told me that Phil had been rushed to the hospital in an ambulance. I felt disorganized and panicked. I called my friend Betsy and told her to meet me at the hospital. “I don’t want to be alone.”

Phil had complained of a headache the night before. Was this related? What if it’s not a stroke? What if he had a brain aneurism?

I arrived at the ER alone, putting my running shorts to good use, sprinting to the ER from the parking lot. Panting, I yelled, “My husband was rushed here in an ambulance, Philip Beer.” Staff pointed me in a direction, and Phil’s coworker Brian recognized me.

We were standing outside an ER room where 15 physicians worked on Phil, the door closed. What happened?

“Yeah, he was at his desk,” Brian said, “typing an email, and I asked him a question, and Phil turned around. I thought he was responding to my question, but then he just fell off his chair and hit the wall. His shoulder and his head a little. We kind of held him down, ’cause he wanted to get up, but I told Matt to call 911. Phil told us not to, that he was fine. No way was I not calling 911. That was at about 10:15AM. Phil was talking nonsense, about the trees in the forest.”

As Phil’s caregiver, and with his heart history, a past of atrial fibrillation, I knew the early warning signs of stroke, especially any disorientation or random crazy talk. I also knew, from a woman in my writing class years ago who’d lost her young daughter to a brain aneurism, that an early sign of it was a severe headache.

I saw Phil’s toes before I saw his face. A doctor was asking him to wiggle them. Only the toes on his left foot moved. When I was able to see Phil’s face, he shook his head at me and tried to say, “Can you believe this?” I understood without his having to speak. I knew that he was thinking, “Unbelievable. It’s always something.” Through all the SVU, Law and Order, and medical dramas we’ve seen, any time a character is diagnosed with a-fib or v-tach, he says, “Oh, jeez. Why they gotta give ’em what I have?”

“Your husband is having what looks like a stroke, and timing is important. We need to ask you questions.” The doctors asked me the last time he’d eaten, for a list of his current medications, any allergies, any conditions. Had he been taking blood thinners? Aspirin? Was he a lefty? He told them he was a lefty. He’s not. I was his medical proxy and his truth.

They administered IV TPA drug,* something to help dissolve the clot, which he qualified for, given that we were able to act so quickly.

My father, Phil’s parents, and Betsy arrived. We all tried to circle around his bed, while keeping clear of the 15 doctors. I made sure to keep my reactions light, hoping to convey that I was here, that I loved him, that everything was going to be fine. I smiled. When your child falls, your reaction can scare him more than the fall.

After CT scans with contrast they confirmed that it was “a severe stroke,” a large ischemic clot: an obstruction within a blood vessel supplying blood to the brain. Only it wasn’t some minor vessel but his left MCA, middle cerebral artery. Given his age, 48, history, and the fact that the IV TPA drug wasn’t doing anything to dissolve this clot, they asked if I’d give my permission for them to go in and perform brain surgery.

Deja vu.

I’ve signed these papers before, when our son Lucas had emergency brain surgery. We apparently do nothing small in this family.

“There have been a few trials,” said a doctor. “We basically go in through the groin, up to his brain, go in and suck the clot out. But I must make you aware of the risks, because this is risky of course.”

He warned of bleeding out, uncontrolled bleeding in the brain, groin bleeding, breaking the clot, blood rushing in when the brain tissue isn’t ready for it, a stroke occurring in a new location.

“One in four patients who have this procedure are able to become functionally independent.” So, three out of four patients are dependent for the rest of their lives?

This procedure is called a mechanical thrombectomy.** I just now had time to look all this up. Because when you’re in the moment and timing is critical, there’s no time to google. Instead, I asked simply, “If this were your child lying here, would you have him have the procedure?”

“Yes, I would,” he said.

“Then, do it, absolutely. Take care of our boy.” I signed the papers without reading them.

The transport team wasn’t moving fast enough. The ER team didn’t exactly know where they were going, but they weren’t about to wait for transport to show up. To hell with it. The ER team rushed him through the halls themselves.

10:30AM symptoms started. By 1PM he was on the table for clot retrieval. And we were to wait for up to two hours or so. Everyone wanted to wait in the cafeteria. I couldn’t eat, for once.

He’s going to be in a wheel chair forever. We’re gonna have to move to a ranch model without steps to enter the home. A master bedroom on the first floor. The kids are going to have to start at a new school, with their father so unrecognizable, so missing. He won’t drive or walk or be able to say, “ball.” He can’t question their teachers or talk at parent/teacher conferences. I’ll have to spoon feed him. I’ll take out the garbage, lift the heavy stuff, be a single mother, basically teaching and wiping another child. Not a child, a frustrated man, who wants no one to treat him like a child. I’m going to have to take care of all our finances. Does he even have disability insurance? Even if they finish this surgery and call it a success, how successful can it actually be? I mean, he couldn’t speak or move at all. Facial droop. Even the good news was going to be bad news. I smiled and told his mother, “He’s gotten through worse. He’ll be fine.” Didn’t believe a word of it.

He won’t be able to walk or talk, and he’s going to hate me for making him try. These were awful thoughts to have, but you can’t judge how you feel or what comes to mind. I didn’t say any of them. Instead, I posted the news on Facebook and asked others to pray. I did some of that, too.

I started to cry when I received texts from Smelly, Dulce, and Alexandra. Smelly left work in Manhattan, and zipped out to the hospital. Dulce and Alex drove two hours in from the Hamptons. Betsy picked the kids up from Adventureland and told them it was a surprise sleepover playdate! She ran to Target, bought them underwear and new clothes for the next day. Croissant and waffles for breakfast. She spoiled them with ice pops before she and her husband Adam made a cookout of hamburgers and hotdogs for the kids. She got balloons for a water balloon fight. Glow sticks for bedtime. I am profoundly grateful. There is absolutely nothing like people just showing up. I don’t care what you say, I’m coming. I appreciate it deeply.

The surgeon found me in a hallway near the waiting room. “Totally successful,” he said. “He’s almost back to normal.” I was in shock for the second time that day, intensely relieved. “It couldn’t have gone better.”

He will be in this hospital for a few days, of course. I’ve noticed that he still mixes up words, says things like, “Can you believe I had a strike,” instead of “stroke.” He’s a bit tripped up on certain words from time to time, but they say that will improve. They just now moved him out of the ICU to the Stroke Ward. He hasn’t tried to sit in a chair, or stand or walk yet. But, baby steps. When Phil saw the surgeon during rounds this morning, he asked how serious his stroke really was.

“Oh, you really dodged a bullet. It was definitely life-threatening, and you could’ve been paralyzed for good. I’ve never seen anyone recover as well as you have.”

“Really, they reversed it?” a visiting friend said.

“Yup,” I said, “he’s even talking again, which, ya know, is a mixed blessing.”

 

* The only FDA approved treatment for ischemic strokes is tissue plasminogen activator (tPA, also known as IV rtPA, given through an IV in the arm). tPA works by dissolving the clot and improving blood flow to the part of the brain being deprived of blood flow. If administered within 3 hours(and up to 4.5 hours in certain eligible patients), tPA may improve the chances of recovering from a stroke. A significant number of stroke victims don’t get to the hospital in time for tPA treatment; this is why it’s so important to identify a stroke immediately.

** Doctors try removing a large blood clot by sending a wired-caged device called a stent retriever, to the site of the blocked blood vessel in the brain. To remove the brain clot, doctors thread a catheter through an artery in the groin up to the blocked artery in the brain. The stent opens and grabs the clot, allowing doctors to remove the stent with the trapped clot. Special suction tubes may also be used. The procedure should be done within six hours of acute stroke symptoms, and only after a patient receives tPA. — http://www.strokeassociation.org

 

Comments

  1. Stephanie, I have been thinking about you nonstop since you posted the news on Facebook. You are both so strong and amazing and you seem to have all the forces of the universe pulling for you.

    “He’s almost back to normal.”

    I could hardly ask for a better prognosis.

    I’ll be thinking of you some more, and then maybe a little more after that. Then probably even more each time I check back here for updates. All my best to Phil and the kids. xo

  2. I have been a long time reader… Since before your kids were born. When my son was in the nicu, i reread your posts aloud to my husband, finding comfort in them. My heart sank when I saw this, but my thoughts and prayers are with you and your family!

  3. Hey Stephanie…
    Thank God Phil is doing well. Every second counts in these situations and in Phil’s case, it gave him a fighting chance. Your family has been through so much and it’s an honor to follow your journey. You are all in my prayers.

  4. So happy for the a great outcome. I have been praying and will continue to do so in the days ahead. You are so strong!

  5. Thank you so much for the update!!!!

    I am just a reader of your blog but I burst into tears after reading the good news! Your friends sound amazing.. Especially Betsy – she’s a godsend!

    P.S. Continued prayers and healing thoughts being sent Phil’s way! And prayers for strength and calm being sent your way…

  6. Oh Stephanie. Keep writing. We are so blessed to be here with you. And so sp grateful that Phil seems to be one of the lucky ones !!!

  7. I’ve been a long time follower, and though sporadic now, you and the family get my prayers often. I was sorry to hear this happened but I was praying and I’m thankful for the news! I’ll keep praying

  8. Stephanie- while I don’t know Phil well we were neighbors in Boca. Very relieved that he has had such a great outcome. Will keep you guys in my thoughts and prayers- stay strong!

  9. Wow. I am so happy for you and your family that the surgery was successful and that Phil appears to be healing up very well!!! You’ve surpassed your quota of Family Health Problems, so here’s to NO MORE! I hope everything continues to go well, and that you give all your friends and family some huge, teary hugs for their -showing up- fer ya.

  10. I don’t know if you or Phill remember me , but I use to do his echoes in Austin ! You know the girl that started crying, because I was so upset about his heart not doing better ! Lol I’m so glad he’s ok , I have to admitt I did shed a tear it really upset me . He always has the best attitude and kindness , even when he’s not well ! I miss seeing you guys . Tell him the cry baby said hello !

  11. So glad he’s okay Said prayer when you posted Send him my best

  12. Thank you for taking the time to post an update, and GLORY HALLELUJAH! I couldn’t fall asleep last night for wondering and worrying! Hoping Phil’s full recovery is easy and quick. Keeping you all in my prayers.

  13. Thought about you guys all day. So glad it looks good & that you have your people around you helping out. Will continue sending positive thoughts and energy.

  14. Amazing news. I hope you will use this miracle second chance to truly be happy together & see the bigger picture.

  15. I am so relieved to read that Phil’s surgery was successful and that he is healing quickly. Best wishes to Phil for a speedy recovery, and to your entire family, including Betsy…thank goodness for her!

  16. I am a longtime reader and fellow Austinite. I have been praying for ya’ll all day. I’m so glad it went well. You are in my thoughts and prayers from now on. Samantha

  17. I read this holding my breath. Which I have been doing since you first posted on FB. Thinking of you. Praying in my own way. Hugs from afar… L.

  18. I am so relieved to read this. Keeping Phil and your family in my thoughts.

  19. Great news, Stephanie. Get well, Phil. Thoughts are with you all.

  20. Stephanie, in case you don’t know this, I just wanted to warn you that it’s completely normal to develop a temper after a stroke. Even if there’s an almost full recovery from the stroke. Watch out for the temper. Like, seriously. It’s very sudden and swift and then over with, like a tornado, and the stroke person can’t understand why people are hurt or scared or whatever. I’ve seen yelling, hitting and throwing things.

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