Chronicle of a Stroke, Day 3

Originally posted on January 17, 2011

January 7, 2011.

In the wee hours of the morning - maybe 3 or 4 AM? - the nurse came to put a new IV in Al's arm. I'm not sure why, but he already had 2 in his right arm, and they were both bothering him greatly. So the nurse decided to try his left arm. I was glad he wouldn't feel that one as much, but I was relieved at the same time to hear him say "OW!" I knew his arm wasn't completely dead!

Around 5 AM, the nurse came in to take Al's vitals, and at this point, he awakened easily and was using fairly easy speech with full sentences. I was thrilled to hear his voice! He was also able to lift his leg and feel more in his left arm. Throughout the day, we waited for confirmation that he could be moved back out of ICU (although, to be honest, I was thankful for the private room and quiet environment.) However, the stroke team decided that Al should still spend another night in ICU for further monitoring.

However excited I was about his alertness, I was still scared. My fear for his life was dissipating, but I was still afraid the unknown future. I was slowly starting to realize what a stroke does. It doesn't just cause temporary numbness and tingling. Al had lost most of the feeling and mobility in his entire left side, and some of that had returned, but I had been hoping that it would all just gradually return, like a sleeping hand or foot slowly wakes up again. But that isn't how it works after a stroke. The brain has to create entirely new pathways to communicate with the affected side.

As Al began to feel more awake, he told me he felt like he could just get up and cruise around with a walker. But what he and I didn't fully realize was that even though he thought he could tell his left side to move, his brain simply wouldn't obey. As one physical therapist put it, "His brain is ignoring the left side of his body."

I went home once again to get a shower and make a few phone calls. I was pleasantly surprised to find my house entirely clean. A few of my neighbors had rallied to take care of the mess that had been left behind in our post-holiday rush. Shortly after arriving home, my friend Jan came by with all my laundry, fresh and clean. Oh, the blessings of friendship!

Back at the hospital, later on in the afternoon, I was trying to doze and I prayed that I would fall asleep quickly. The thought crossed my mind that maybe this was one of those awful nightmares, and I would be so thankful to wake up and have Al sleeping next to me in our own bed. And he would be perfectly healthy. Sadly, I soon realized that this experience had far too much detail to be a dream.

As afternoon drifted into evening, I made sure Al had dinner and his beloved bottle of Sprite. I asked him about 48 times if he was OK and if he needed anything else. Then I finally convinced myself to leave. I went to pick up my children at my friend's house at around 7:30, and when she learned that Al was still in ICU, she offered to have them stay one more night. It was an arrangement that everyone was happy with, and I went home to sleep. I was tempted for a few moments to just head back to ICU and sleep next to Al a second night, but as I stopped by Phil and Michelle's house to pick up a few things, Phil convinced me to go home to sleep. I had to admit that my own comfy bed was much more appealing than the recliner at the hospital. I took a Unisom and was able to sleep straight through until 8 AM. To be honest, I could have slept longer, but I wanted to get back to my hubby's side.

Chronicle of a Stroke, Day 2

Originally posted January 16, 2011.

January 6, 2011

I had been dozing in the chair next to my husband, content to hear him breathing. When the nurse came in to wake him, I realized that he was still as groggy as the night before. He had a hard time waking up and keeping his eyes open. His speech was getting more labored and muddled. I figured he was still fatigued from the previous night's ordeal. However, when the stroke team came in to visit him, they were visibly concerned at his overly sleepy state and his complete lack of sensation or movement on his left side. They ordered yet another CT scan (CT #3!) to find out if there were any new developments. (All this time, and we were still on the waiting list for an MRI!)

The next 24 hours were the most blurry, perhaps due to lack of sleep and the surrealism of it all. I had decided to go back home (thank goodness the hospital is only 6 blocks from our house), and get some more clothes to send to my friend's house for my kids. Some time during that hour (or was it two hours? Maybe 3? I can't really remember), I got a call saying that Al was going to be moved to Neuro ICU so they could keep a closer eye on him. I think that's when I fell into a full-fledged panic. I called my mom and sobbed to her over the phone that Al might have had a stroke. I told her that the idea of telling Al's parents was terrifying. We hadn't called either family until then because we wanted to have answers before worrying them, and we were hoping all would be well by the next day.

Once I returned to the hospital, I got the definitive word – first from my husband, and shortly thereafter from the stroke team, that the 3^rd CT scan showed an area of stroke.

Damn it! It really was a stroke. And I was afraid it would take my husband away. Even if he survived, I wasn't sure what he would be like when it was all over. I was slowly learning that a stroke isn't necessarily an instantaneous event. I would later learn from one of Al's nurses that a stroke can progress for 3-5 days. I was growing more worried since Al's condition had already deteriorated quite a bit from the night before; I didn't want to know how much worse it could get.

I called Al's parents, and thankfully his dad answered. For some reason, I was able to hold myself together enough to tell him the news; I'm sure I wouldn't have been so composed if his mom had answered. There was no tactful way to say it, so I just came out and said, "Al had a stroke. It's in the area of his brain where his tumor was. He's in ICU. He can't feel or move anything on his left side." It seemed my words were so blunt, but there was really no other way to say it.

There had been a flurry of phone calls for the past day, but at one point, I realized that our good friends Michelle and Phil may not know what was happening yet. I called and left an abrupt message: "Al had a stroke. We're in the ICU. Just thought you'd like to know." Phil was there within the hour. He looked sad and concerned that his friend had once again landed himself in the neuro ICU. (A few years back, Al had flipped his scooter and managed to break his scapula and 3 ribs. Neuro ICU for the first night was just precaution, and then he spent 2 days in the neuro / ortho step-down unit.) And obviously even more concerned since a stroke is much more ambiguous in terms of damage and extent. He visited a while and then offered to retrieve anything we needed from our house. I asked for my laptop so I could get online and update people en masse, instead of trying to catch the now-steady stream of phone calls. A while later, Phil's wife, Michelle returned with the requested computer and my warm bathrobe, which turned out to be a gigantic blessing later in the night when I slept in a vinyl chair beneath a frigid window.

At around the same time, our family doctor – and long-time friend of Al's and mine – showed up to check on us. His reaction concerned me the most as he looked over Al and tested the feeling on his left side. As I stepped outside the room with Dr. Pete, he told me more than he had dared in front of Al. He voiced his concern about the density of Al's stroke, and how it was devastating to see it happen to a friend. I asked the scariest question of all: Was there a possibility that Al would never regain the use of his left side? Dr. Pete admitted that it was a possibility, but not a very big one. Al is young, and he had learned to walk again once before, after his childhood brain tumor. But I still cried and Dr. Pete hugged me as he got ready to leave.

Al and I settled in for his second night in the hospital. He was still as sleepy as ever, so it didn't take much to get him ready to nod off. I, however, had to take a long walk to use the bathroom, and then try to make myself as comfortable as possible in a vinyl recliner.

I had slept for maybe an hour when I heard Al's nurse come in and try to wake him to take his vitals. She started out in a loud whisper, “Albert, wake up.” Nothing. She got a little louder, “Albert, Wake Up!” She started tapping his shoulder and leaned her face in close to his. I was quickly growing concerned. He simply wasn't rousing. After a few more minutes of poking and prodding, Al began to mumble something incoherent. I tried not to panic, but my fear was that the stroke was taking more away than just his movement. I prayed to God that his mind would still be intact. As the nurse's voice had escalated to a yell, Al did not open his eyes, but stated in a very determined, deadpan voice, “You're yelling in my face.” Ha! His mind was still there! He told me later that the nurse had breath that would wake the dead, and he had been trying to formulate a tactful sentence that would convey the message to her.

After the vitals were taken, we drifted back off to sleep; Al more deeply than myself, I'm sure. Still, I was able to sleep more soundly than the night before, knowing Al was breathing a few feet away from me.

Chronicle of a Stroke: Day 1

This is the beginning of Al's Stroke story, which I originally posted in my other blog on January 15, 2011.

January 5, 2011

Five days after the New Year, three days into a new school week. We were still winding down from the holidays, and our bags weren't even unpacked from our recent trip up north. Near the end of the work / school day, I received a call from my husband. It seemed a little odd because e-mail is our standard mode of communication during the work day, and we had already bantered back and forth quite a bit. It was also just a little different that he was calling me from his desk phone instead of his cell phone. Oh well, I was sure he just had a quick question about the evening's activities or something.

I answered cheerfully, and he told me he was hoping my co-worker would have answered. He started saying maybe he should explain to her what was going on, and she could relay the message to me, because he didn't want me to worry. OK. I started to feel a little uneasy. No, I assured him that I would be fine, and that he should just go ahead and tell me what was going on. I prepared myself for the worst - by the way he was acting, I was sure he must have lost his job. But I was completely wrong.

He began by telling me that he had been having short periods of numbness and tingling down his left side for a number of weeks, once or twice a day. He hadn't mentioned it because he didn't want to worry me. But now, he was having increasing numbness on his left side that hadn't gone away. He was calling to tell me that his boss was going to call 911. He didn't want me to be blindsided by getting a call saying he was transported by ambulance to the hospital. But he seemed very calm and collected, so I was sure the 911 call was just a precaution – they didn't want him driving himself to the ER with limited sensation on his left side. He had also had similar symptoms a few other times: once during a time of high stress in his life, and the doctors concluded it was just anxiety, and another time when he developed Bells Palsy, where the left side of his face was numb and limp for a few weeks. What I didn't learn until later was that he had already fallen down and hit his head, and that his boss saw that the left side of his face was drooping.

OK, I promised not to panic or worry as I hung up. Then I quickly tried to come up with a plan for my 4 kids who were just getting out of class and making their way into the school office. I had to figure out a way to quickly tell my co-worker what was going on while fighting back a little bit of panic, all without my kids noticing. She, of course, told me to just go and not even worry about getting my desk cleared up, etc.

I went into the copy room to make a phone call. I got through to one of my besties, Heidi, and asked if my kids could come over after school. If my kids could live anywhere else, it would be at Heidi's house – her kids are my kids' best friends, they live in a gigantic, wondrous house filled with fun things to do, and they have a fabulous sledding hill in their back yard, as well as a frozen pond for skating just across the road. I told her what was happening, and she hesitated only for a second – being a busy homeschooling mom of 8! - and said, “Sure, bring them over!” So, I quickly herded my children out the door, trying to do my best to answer their questions about what was going on, I simply said, “I have to go and meet Daddy somewhere for a little while.” They pressed me for more details, but I told them they would have to wait.

Once the kids got settled with Heidi, I headed back across town toward the hospital. However, I hadn't eaten much since lunch, and it was going on 4 PM. I figured the ER visit would take a while and I should get some food so my blood sugar didn't plummet. I tried to hit the McD's drivethrough, but there was a tremendous line, so I just ran in to get take-out instead. All the while, I was thinking, “This would seem kind of selfish if anyone knew that my husband was being whisked to the hospital in an ambulance.” But knowing what I know about my blood sugar levels, if I don't eat regularly, I can become an incredibly emotional mess. And I was already close to it.

However, I was able to keep myself from panicking. I talked myself down, reasoning that there was most likely a simple explanation. At moments, I almost felt annoyed that we had to deal with another issue. I was afraid, but reasonably sure that it would turn out to be nothing and we would have spent our precious evening in the ER instead of warm and cozy at home. I figured that maybe I would be able to take the next day off if we were a long time in the ER.

Once I arrived at the ER, I was led to a room where I found my husband's coat, but he had already been taken away to have a CT scan. I was glad for a few minutes of quiet before they wheeled Al back in. The first thing he said to me was, “The lengths I go to to get a day off of work!” He told me that his boss already told him to take the following day off, and he had made an appointment to see our family doctor first thing in the morning. At this point, I was still sure that they would be running a few tests and come to the conclusion, once again, that this was somehow anxiety-related. I decided that, yes, I would take the next day off, go to Al's appointment with him, and spend the rest of the day at home with my hubby. That would be nice.

Shortly after Al's return from the CT scan, an X-Ray technician came in with a portable X-ray machine. “Wow,” I thought, “They're pretty quick with these tests.” Not the slow-moving ER I had experienced in the past. I was hoping we'd still be able to get done and get the kids to bed at a reasonable time.

After the X-ray, I was able to get a bit closer to Al and I noticed his left eye was wide open. The Bells Palsy a few years earlier had left it slightly more wide open than the right, but at this point, it was even more noticeably wide open. And his smile was droopy on the left. But he was still my goofy husband, talking about getting to stay home from work the next and playing his new video games from Christmas.

While we waited to see doctors, he had to go to the bathroom. We pressed the call button, and in came a male nurse. He brought over the urinal and started to undo my husband's belt buckle. I stepped in and said, “I can help him.” And then Al added his 2 cents: “It's OK, she's had my pants off before.” Ahem. He definitely hadn't lost his sense of humor.

Once we took care of the potty, I noticed his lips were dry, so I dug out my recent Burt's Bees purchase: “replenishing lip balm with pomegranate oil.” I spread some on his lips and put the tube back in my purse. A few minutes later, I realized that the lip balm was actually kind of pink and sparkly. What a nice touch!

Not too long after, a neurology doctor showed up and told us that the CT scan and X-ray didn't reveal any problems. They had Al do a few tests, including strength tests of his right and left limbs. He was able to lift both left and right legs, and left and right arms, although the left side seemed notably weaker. The doctor left and returned shortly with another neuro doc, specifically a “Stroke Fellow” (sounds funny, doesn't it?). That's when they started using the word, “stroke”. I was sure they were mistaken, and that eventually they would come to the conclusion that this was all due to stress or some funny side-effect of medication.

Once the doctors left the room, Al and I had some quiet, and the room was dark. Suddenly, Al became very drowsy. “I hope they don't mind if I drift off”, he said, and fell asleep as soon as he had said it. I assumed that he was starting to feel the stress of the day and just got tired. However, when the stroke team returned, they were much more concerned about his marked drowsiness, and his deteriorating sensation in his left side. They asked him once again to move his left leg and arm, and he was barely able to do it. They ordered a second CT scan – a CTA, which uses a contrast, inserted through the IV, to get a more enhanced picture of the brain, and they would also scan his heart and major arteries from heart to brain.

Once again, the CTA came back negative. “See? It's not a stroke,” I thought, figuring that at least they were getting closer to the diagnosis. The stroke team continued talking to us about our "options": did we want to give Al a TPA, a clot-busting drug, just in case this was a stroke that was not yet showing up on the CT scans? "How should we know? You're the doctors!!!" (I only said that in my mind, but I thought it was kind of ludicrous that they were asking US what we wanted to do.) Administering a TPA carries a small risk of brain hemorrhage, a risk we weren't willing to take unless the doctors were certain this was a stroke. And they wouldn't know that until they could do an MRI, for which they had him on the waiting list.

Meanwhile, the orders had been put in for Al to spend the night for further tests. He got a room rather quickly, and once he got settled, I went home for some sleep. I had called Heidi earlier on in the evening, and she offered to keep my kids overnight and get them to school in the AM.

I got home, had something to eat and went to bed at around 11. I slept fitfully for about 3 hours and then I woke up at around 2. I called Al's nurse and she told me he was sleeping peacefully, but that he had "returned" his dinner, due to the dye from the CTA scan making him nauseated. Poor guy.

After I got off the phone, I succumbed to the anxiety and emotion of the past several hours and had a good cry. I think I was slowly starting to realize that there may be something serious going on with my hubby. I started to fear the worst. What if he died while I was gone? What if he drifted away and I could never talk to him again?

I prayed. I got on Facebook to see if there was anyone to chat with, I did some laundry, I tried to sleep some more. Nothing worked, so I took a shower and got ready to go back to the hospital at the very reasonable hour of 5 AM. Once I got there and found out my husband was still alive, I breathe a sigh of relief and dozed off in a chair next to him for the next few hours.

The Stroke

My husband had a stroke on January 5, 2011 at the age of 37. To say that it was "unexpected" is an understatement.

Al, however, said he had always felt like a ticking time-bomb, as if he knew in the back of his mind that something like this was bound to happen to him.

When Al was 6 years old, he had an inoperable brain tumor, a cystic astrocytoma, to be exact. It was too deep in his brain to be removed surgically, and there was a cyst attached to it that continued to fill up with fluid and press on the motor nerves for the left side of his body. After the first surgery, the doctors put a shunt in so that they could more easily drain the cyst. That was all they could do, or so they thought. But his parents consulted the best surgeons in the business and eventually convinced one of them to do radiation on Al's tumor, even though the medical evidence at the time showed that radiation would be useless on that particular type of tumor. The bottom line is that after a year of treatment and surgeries to drain the cyst, the tumor was completely gone. Even the doctors agreed that it was miraculous - there was no reason that the radiation should have worked, but it did!

For 31 years, Al has been tumor free. We often used the large, horseshoe-shaped scar on Al's head to witness to others about God's healing power.

However, Al had always wondered if his past would come back to haunt him.

And in a way, it did.

Once the doctors determined that he was indeed experiencing a stroke, they told us that it was in the exact location of his tumor 30 years ago. Our doctor explained that the radiation must have damaged the vessels in that part of his brain so that the stroke was inevitable.

Now, we are working on Al's rehabilitation once again. And we are actively putting our hope in the God that saved Al's life 31 years ago!

Welcome to My Blog!

I'm Jen. I love to write. Writing is therapeutic, cathartic, and a great escape for me. My family has gone through several kinds of therapy over the past few years: I began therapy about 2 years ago to deal with anxiety and depression. My husband had a stroke on January 5, 2011, and has been subjected to physical, occupational, speech and recreational therapy for the past 10 months. Now our entire family is endeavoring to begin family therapy so that we can deal with our various levels of fear, distress, and anger since Daddy's stroke, as well as the depression and anxiety that existed before the stroke.

I will attempt to write along these 3 threads in this blog - my own personal therapy, my husband's stroke rehabilitation, and our family therapy - although I'm sure there will be much overlap of the 3 arenas.

I will also include many "flashbacks", since we are 10 months into the stroke drama. Try to keep up!