As the World Turns… (a.k.a My husband’s stroke)

Just kidding! I keep joking that our life is like the world’s worst soap opera, HA! Maybe you can help me with a better title… comment below!

I distinctly remember writing earlier this year that 2020 had been difficult for everyone. And that, for many of us, 2021 was not going to be “all sunshine and roses…”

I also remember writing “You never know what the next 5 minutes is going to hold.”

In early August, my children and I headed west to see my son Cole and my brother Jeff, who both live in the Colorado Rockies. (My husband William stayed home. He wanted to save his vacation time for basketball season.) As always, we make an interesting group: Myself, ten of our children, and future sons-in-law, Thomas and Elliot, loaded into two vans.

On Sunday, the 8th, Cole took us to Sand Dunes National Park. It was a beautiful day, and none of us had ever been there. The trek up the Sand Dunes on foot was somewhat more tiresome for myself than for all those energetic young people, and I told them all to cruise on ahead and I would follow at my own pace.

At some point thereafter, my phone rang. I was surprised, because there was next to no phone signal out there. When I realized that the caller was my husband’s niece, I knew instantly that it was bad news. William had been in Wichita that Sunday, visiting his mom and brother.

She told me that William was having a stroke and was being taken to the ER.I took a few minutes in prayer and tried to pull myself together before charging ahead to catch up to the kids. I hated to have to tell them. What an awful way to end a fun trip.

When I did, Cole snapped into big brother mode. He directed Elliot to drive one van, and Thomas to drive the other. He gave me a “You are absolutely not to drive…” speech, and we headed home. It was ten hours to the hospital.

Some of our adult children who live nearby made it to the hospital long before we did. And of course, his mother was there with him until they arrived. I was grateful he was not alone. When I finally arrived, I sent our daughter Dakota (who lives in Wichita) home to get some sleep. (Only 2 family members were allowed at a time. A few days later that changed to 1 family member.) Amanda stayed with me, and then finally went to her truck to try to sleep a bit. I sat in a chair in the ER with William all night.

In all, it was 30 hours before a room was available and he was transferred to the neurological intensive care unit.

William had suffered an ischemic stroke, or clot-type stroke, on the right side of his brain. The clot caused bleeding in his brain. They did not use a clot buster medicine, because it was too risky with the bleed. Initially the stroke appeared to have been not too terrible, because he still had the use of all his limbs. The main problem appeared to be his speech and inability to swallow.

By that first night in the ICU, however, he became increasingly “far away.” He spent the night attempting to pull out IVs, etc, and trying to get out of bed. He seemed not to understand anything I was saying to him. By morning, he was significantly weaker and losing mobility.

The next CT scan, in a series of many, many CT scans, showed that the swelling was increasing in his brain. The neurologist assured me that the swelling would soon peak, and then we would know what we were dealing with.

The treatment for clots is blood thinners, but blood thinners could not be given with the bleed in his brain. Surgery was too risky, and so we began to wait.

In addition, he couldn’t swallow. So that meant no food or water. It was a week before he had any water. And he was not incoherent. He was very thirsty, and he really wanted water, which was intensified by the drugs to draw swelling off his brain.

My brain is fuzzy with the details. It seems that those days have all ran to together in my mind. But every day, the swelling increased. His left side became immobile. He became weaker and weaker.

He always knew who I was, though. And he asked for our younger children continuously. I couldn’t seem to make him understand that they couldn’t come in. (No children younger than 12 were permitted in the building. ) At times he thought we were at home. Other times he asked me if we were in various towns, Haviland, Great Bend… He asked me many times “How did I get here?” His speech was difficult to understand, but I could usually figure out what he was saying, and I would act as an interpreter for the medical staff.

At some point, we realized he had developed a clot in his arm at the site of his PICC line (a specialized IV.) There was a flurry of ultrasounds and more CT scans. Blood thinners were a no-no because of the brain bleed, but blood thinners were a must for the clot. If it moved to his lungs, it would all be over. So the doctors began treating the clot with heparin and we all sort of held our breath.

Within a few hours of that, he lost all ability to move. He could still whisper to me. His heard hurt badly, because of the pressure in his brain. We kept the lights off as much as possible, because the light hurt. At some point late in the evening he was whisked away for the second STAT CT scan of the day.

When they brought him back to the room, I sat by his side holding his hand in the darkness. It seemed likely that the bleeding in his brain was increasing, and he and I both thought the end was near. I spoke scriptures aloud to him. I played his favorite hymns for him on my phone. I prayed, both aloud and silently, not even knowing what exactly to pray for.

He whispered to me about a certain memory, with tears running down his cheeks. He could barely speak at all, but somehow I understood and I knew what he was talking about. About twenty years earlier, he was driving home from work one day. It was about 4:00 in the afternoon, and it was snowing. It had been snowing all day.

Our neighbor to the south called on the telephone and asked me if William was home from work yet. I said no, but he should have been now. (This was before we had cell phones.) Rhonda said she could see a vehicle stuck in a snow drift down the road, and thought it might be his.

I went to the door and looked out. I could just barely see a dot moving in the sea of white, he was walking home across the field. Our son Cole was about 5 years old. He stood on the porch for probably an hour, leaning out from the railing, yelling “Come on Dad! You can make it!” (I had apple pies in the oven, and the aroma of those pies baking and the falling snow are etched in that memory.)

Later, when he made it home, he told me he was so exhausted from walking through the deep snow that he wanted to lie down and collapse. But when he heard Cole yelling, he kept going. He knew we were watching and he just couldn’t quit.

That was the memory he spoke of, that night in the darkness. He asked me to tell the kids that he loved them. Through my tears, I told him “you are going to make it home this time too.” Though in all honesty, I had no idea if that was true.

Don’t get me wrong, my faith in God is very strong. I know that He is able to do anything He wants to do. I know that He is our healer, and that no situation is beyond His strength. I know that He cares, I know that He was with us in that dark room, surrounding us with His very presence, never leaving us for a moment.

But I also know that this world is not our home. We are here for a moment. Who knows when that moment will be over?

I am not afforded the luxury of denial. There have been many loved ones in our lives who have gone to be with the Lord so early. I have watched three dear friends, homeschooling mothers with children still at home, lose their husbands to various illnesses. And two more friends who have lost their young wives. All in recent years. My own brother lost his wife this very year, leaving him to raise their four children. So, “It just can’t happen to me” is not a thought that I can entertain.

Nevertheless, the next morning he was still with us. The CT showed worsening cerebral edema, but the brain bleed had not increased too much. Not many days after that, he improved briefly, but then took a turn for the worse.

More Trouble

On one particular afternoon, our pastor called and wanted to visit. I had to actually leave the hospital in order for another visitor to come in. (Only one visitor per patient was allowed in the building, because… covid.) I went to the parking garage and waited in my vehicle while Pastor Steve went up to see him.

After a while, Pastor texted me to let me know he was finished, and I could go back to the room. He told me that he was very concerned, William seemed almost unresponsive. Which had not been the case when I left.

His level of consciousness and awareness, was up and down so much. But when I returned to the room, it was definitely down. For the rest of the day, he was worse.

The next morning, the doctor ordered his 10th or 11th CT scan (I lost track at some point.) When the neurologist came in the room, he looked at me and said. “His scans are very bad.” This time the swelling had encroached the opposite ventricle to the point that the doctor was ready to remove a piece of his skull, which is extremely risky. He said there was evidence that he had suffered another stroke in the same area. But when he turned and examined him physically, he looked better than he was expecting. So he decided to give it one more day.

Pastor Steve and I both believe that the second stroke happened either right before he came in or while he was there. Later on, William told me that he does remember Pastor being there that day. He said that he could feel himself wanting to slip away. But as Pastor prayed over him, he began to consciously hang on.

Might I just add, the nurses in the neurological unit were exceptional. They were such genuine, compassionate people. Several of those men and women are walking around with a piece of my heart. They went out on a limb for us a couple of times.

The following morning, one nurse very delicately approached a difficult subject with me. He asked if I had any concerns with William’s care. I expressed that I did. At that point, we were 2.5 weeks in, and he just kept getting worse. He encouraged me to ask for a second opinion if I wanted to. So I did.

The second doctor ordered a new round of CT scans and MRIs, and formulated a new plan for treatment. Finally, finally, at almost 3 weeks after the initial stroke we began to gain some ground instead of losing it.

I remember the first time he lifted his left arm off the pillow, I was so excited! When he started to crack jokes again, I knew we were getting somewhere!

There was a physical therapist at the hospital named Lindsey. She has a reputation for being “crazy driven.” She is incredible. In a week’s time, she and a couple of other therapists took William from almost complete immobility (at his worst, he couldn’t even lift his head) to being able to work all his limbs.

Lindsey and an assistant would support William’s weight and hold him up, while she moved his legs herself and walked him down the hall. A few feet the first day, and farther each day. It was like an athletic event, with Lindsey coaching and straining like a weightlifter, and myself, the nurses, and even our sweet housekeeper cheering and coaxing William on! I have never seen anyone work as physically hard as Lindsey in a pair of scrubs!

As she explained to me, moving his limbs for him in addition to him willing them to move, would cause neurons to fire in his brain and begin creating new nerve pathways. Every day we could see improvement. On the last day he stood, with balance support, but on his own power.

Next Step: Rehab

From there we transferred to Madonna Rehab in Nebraska. That in itself was another answered prayer. Initially we planned to go to rehab in Wichita, but just a few days before we left a nurse suggested we look into Madonna. Madonna is the most specialized rehabilitation hospital in the Midwest, and they receive patients from all over the country. The next morning, the neurologist recommended it as well, “If you can get in. ” So our case worker started making calls.

That was Thursday before Labor Day. We were told that if they would take us, and if insurance would authorize it in time, we would transfer straight there. If not, we would transfer to a different floor, and wait there until at least Tuesday after Labor Day weekend. But we would have to hear by noon the next day.

I went home that night and packed. (I usually stayed in Wichita with our daughter Dakota and son-in-law Shane, I think I went home 3 nights in the month we were there. ) All evening and the next morning, I waited for a phone call about Madonna.

The next morning, we still waited in the hospital room for word. By 11:57, I was pretty sure it wasn’t going to happen. Then suddenly, our nurse burst into the room and said transport would be there to pick him up in 30 minutes! Madonna had called, and said “Yes, if you can get him here by 5.” It was a 4.5 hour drive!

We spent two more weeks at Madonna, where he learned (among other things) to walk, climb steps, and maybe best of all, chew and swallow real food! He worked with physical therapists, occupational therapists, and speech therapists. He attended stroke education classes, counseling sessions, and even recreational sessions. He pushed himself hard, he wanted to go home so badly! The staff there had expected to keep him longer, but in their words “He blew all our expectations and predictions out of the water!”

Counting My Blessings

There are so many ways I can see God’s hand in this situation. But just to name a couple:

First, that William was not home alone when the stroke occurred. He was with his mom and his brother, who recognized what was happening and took him to the ER. Even if he had been with us, we were in the Sand Dunes, a long tedious drive from medical help.

Second, that there was family in Wichita who could be with him while we drove the 10 hours home.

Medically speaking, he is “lucky” to be alive. He’s “lucky” to be in our own home, and not in a nursing home. He’s “lucky” to be walking without even a cane. Of course, it isn’t luck. There were hundreds of people praying! Hundreds! And God is clearly not done with William.

In case you haven’t heard me bragging on them before, my supersized crew is the best! The 80,000 diapers I have changed are nothing compared to the love and support of the army that I have now.

My adult children stepped in and took care of everything for me at home. As of now, 9 still live at home, 2 more are in college, and 6 are grown and out of the nest. Amanda basically moved home for the six weeks I was gone. Lianna and Janaya took turns babysitting and staying at the house as well. They did the shopping, the cooking, the cleaning, the laundry, and Amanda even began the homeschooling. Will and Lisa were a great help as well.

And of course, my parents and my brother were the rocks for me that they are always are. I am moved to tears thinking about how blessed I am with so much support nearby. The stress of this experience was greatly less than it could have been, because I never had to worry about who was taking care of my children and my home.

Many dear friends also brought meals and treats, and stepped in to fill my responsibilities at church. Once again, our friends and neighbors stood by us. We are so very blessed!

For now, William is at home and going to outpatient therapy several days a week. He hasn’t returned to work yet, but he hopes to soon. His speech is still difficult, and he is somewhat self conscious about it. But he is grateful for those who make the effort to ask how he’s doing and encourage him.

THANK YOU, THANK YOU, THANK YOU for your prayers! And it isn’t all over yet, keep praying!

Whatever deep snowdrifts you are struggling through right now, let me encourage you with this little thought. What if the angels in heaven are watching you as struggle onward? And are leaning out from Heaven’s gate, cheering you on, “You can make it! You’re almost home!” I can smell the apple pie 🙂

God, hear my cry; pay attention to my prayer. I call to You from the ends of the earth when my heart is without strength. Lead me to a rock that is high above me! You have been a refuge for me, a strong tower in the face of the enemy. I will live in Your tent forever and take refuge under the shelter of Your wings.

Psalm 61:1-4