.jpg)
When I last posted in this space, it was to flip the big ol' double bird to Arnold Chiari Malformation. Mike was getting ready to go in for decompression surgery. He was supposed to heal up and come home to resume his normal life. Unbeknownst to us, "normal" would go on permanent hiatus.
Mike's decompression surgery in April was deemed a success. At first, anyway. He was in the hospital for about two weeks, then he was released. So far so good. But not long after coming to his parents' house - where they could care for him 24/7 - complications arose. Spinal fluid was gathering in the back of his neck to the point that he looked like he was smuggling a Nerf football under his skin back there. His strength was flagging. He was having severe headaches and wanted only to sleep. Instead of steadily getting better, he was steadily getting worse. Back to the hospital he went.
The course of action was a second decompression surgery. The neurosurgeon and plastic surgeon worked together to patch up the leak. After some more time in the hospital, Mike was again released. This time he healed enough to move back home with me and the girls. For a few days, anyway. The Nerf football grew again and his symptoms got worse again. Back to the hospital he went. Again.
This time around, instead of doing a full decompression surgery, they decided to drain off the excess fluid another way. They inserted a tube into his brain that drained into a little collection bag that had to remain level with his head. We saw the change in him immediately after this procedure. He was alert, docile, and confused. He didn't recognize me or his parents at first, but didn't seem too concerned about it. He was confused about all the tubes and wires he was hooked up to, and he was fascinated with the glowing light from the pulse oximeter on his finger. When I asked him what was on his finger, he said it was a band-aid. I asked him why he needed a band-aid, and he told me it was to hide is ET scar. The doctors didn't want the light to get too bright.
He was serious. He was not on any heavy medication. His brain was seriously working on that level.
After the spinal fluid levels were stabilized, they removed the tube from Mike's brain. He was back to his coherent and frustrated old self, ready to escape from the hospital at his first opportunity. The physical therapists worked with him to teach him to use the walker (again) and be independent enough to get sprung. He was released. Again. Within a several days, the football returned and his symptoms got worse. Again. Back to the hospital he went. Again.
Upon his return to the hospital this time, Mike got a shunt inserted after doing some more time with the external drain hooked up to his brain. The shunt ran from his brain to his heart to regulate the excess spinal fluid. He spent a couple more weeks in the hospital, then a couple of weeks in physical rehab. He was gaining strength and his short-term memory, which had become rather shaky, was starting to return. He was released. Again. The football took a little longer to come back this time, but he was losing strength and balance. This time his return to the hospital was preceded by a fall that cracked a rib. He also had developed aspiration pneumonia; at some point he had inhaled a little bit of food into his lungs because his ability to swallow properly had gotten worse. It was the last time he would go from home to the hospital - because he never would come home again. That was in August.
The doctors decided to revise the shunt so that it would drain in to his peritoneal cavity instead of his heart. That seemed to get the fluid under control, finally. But there was a serious complication this time: blood clots. And one horrifying day, a large clot got lodged in his pulmonary artery. Most people don't survive the type of pulmonary embolism Mike had. But Mike was already in Critical Care, and a doctor and nurse happened to be in the room when he crashed. Had it taken the medical team another five minutes or so to intervene, he would have died in that hospital room. But the doctors acted fast enough to get him into interventional radiology, where they threaded IVs and electric wires through his neck directly into his pulmonary artery to break up the clot, before it was too late.
Once he was stabilized - and hooked up to a room full of machines that were keeping him alive - the doctors told us it was only a matter of time before he would have a major cardiac arrest. Their question to us was, "Do you want us to perform CPR, which can be downright violent, or let him go peacefully?" Mike's family and I spent that day in a hospital conference room, crying and praying and discussing. My sister came to prop me up through the process. Ultimately I opted not to sign the forms. I figured I owed him at least one more heroic measure. He was a fighter, and it seemed wrong to just let him slip away as long as he had any fight left in him.
Mike spent 2 weeks in a medically induced coma on life support. Machines breathed for him because his lungs were damaged by the pneumonia. But as the doctors eased up on the sedation, Mike showed signs of life. He was in there, and he was struggling to surface. The day after they woke him up, they took the breathing tube out. The day after they took the breathing tube out, they moved him to the general medical unit. He had a long way to go, but he was showing signs of progress that led the doctors to believe he was on the road to recovery. The cardiac arrest never happened, and the pulmonary embolism finally broke apart and stopped threatening his life. It was a hopeful time.
But as I said before, he would never make it home again. Mike spent the next few months moving back and forth between physical rehabs, emergency rooms, and nursing homes. He made some strides in physical therapy, but his overall condition never improved past a certain point. He was confined to a wheelchair; the right half of his body was weak, numb, and uncoordinated; he suffered from double vision; and his ability to swallow remained compromised.
That last item there? That's the reason I'm writing an "In Loving Memory" post. He developed aspiration pneumonia several times during his months following the embolism recovery, including in the final days of his life. But instead of going to the hospital when family heard the tell-tale chest rattle and nurses recorded a high fever, Mike insisted he would be fine. He adamantly refused to go to the hospital on the last day I would hear his voice. (I was not with him because I had a cold. I didn't want to get him sick. Yes, that's a regret.) And because he was coherent and capable of making decisions, nobody could make him go.
I got the call at 4:30 in the morning. The kids had to wake me up because I didn't hear my phone ringing. When I finally answered the phone, his nurse told me that she had found him unresponsive during her rounds. She said they tried to resuscitate him, but he remained unresponsive. She said they called 9-1-1 and the paramedics tried to resuscitate him, but he remained unresponsive. At this point I was numbly saying "Uh-huh" in response to everything she said, wishing she'd just hurry up and tell me which emergency room he'd been taken to. Instead, she ultimately said, "I'm so sorry. He died."
I cannot tell you how many millions of times that moment has replayed in my mind over the last two weeks. It seems so much like a distant nightmare. The whole past 9 months feel like a distant nightmare, for that matter. But the reality won't go away. I don't have my husband any more. My girls don't have their daddy. My in-laws lost a son and a brother. There is a gigantic Mike-shaped hole in the world now and there is absolutely nothing that will ever fill it. Ever.
In the two weeks since Mike left his broken body behind, there has been a tremendous outpouring of love and support from family, dear friends, and the community. God's grace and their support are the two things that have kept me from sinking to the bottom of my despair. That, and knowing that I have two little girls need me more now than ever. I want to teach them that life goes on after loss, simply because it has to.
Besides, Mike would haunt my ass if he caught me hiding under the covers binge-eating Oreos. I don't know if he's watching over us through a hole in the clouds or from a big-ol' flat-screen TV in Jesus' own man cave. But I know he's out there. I know he's free. I know he is the most healed anyone could ever hope to be. As our little Em said as soon as I told the girls the news, he doesn't need a wheelchair any more. In fact, I imagine him testing out his newfound ability to fly, swooping through the heavens going, "WOO HOO!!!!! LOOK WHAT I CAN DO!!!"
He was a good husband. He was a phenomenal father. He was loved by more people than he ever would have believed. And I will miss him every single day for the rest of my life.
Mike's decompression surgery in April was deemed a success. At first, anyway. He was in the hospital for about two weeks, then he was released. So far so good. But not long after coming to his parents' house - where they could care for him 24/7 - complications arose. Spinal fluid was gathering in the back of his neck to the point that he looked like he was smuggling a Nerf football under his skin back there. His strength was flagging. He was having severe headaches and wanted only to sleep. Instead of steadily getting better, he was steadily getting worse. Back to the hospital he went.
The course of action was a second decompression surgery. The neurosurgeon and plastic surgeon worked together to patch up the leak. After some more time in the hospital, Mike was again released. This time he healed enough to move back home with me and the girls. For a few days, anyway. The Nerf football grew again and his symptoms got worse again. Back to the hospital he went. Again.
This time around, instead of doing a full decompression surgery, they decided to drain off the excess fluid another way. They inserted a tube into his brain that drained into a little collection bag that had to remain level with his head. We saw the change in him immediately after this procedure. He was alert, docile, and confused. He didn't recognize me or his parents at first, but didn't seem too concerned about it. He was confused about all the tubes and wires he was hooked up to, and he was fascinated with the glowing light from the pulse oximeter on his finger. When I asked him what was on his finger, he said it was a band-aid. I asked him why he needed a band-aid, and he told me it was to hide is ET scar. The doctors didn't want the light to get too bright.
He was serious. He was not on any heavy medication. His brain was seriously working on that level.
After the spinal fluid levels were stabilized, they removed the tube from Mike's brain. He was back to his coherent and frustrated old self, ready to escape from the hospital at his first opportunity. The physical therapists worked with him to teach him to use the walker (again) and be independent enough to get sprung. He was released. Again. Within a several days, the football returned and his symptoms got worse. Again. Back to the hospital he went. Again.
Upon his return to the hospital this time, Mike got a shunt inserted after doing some more time with the external drain hooked up to his brain. The shunt ran from his brain to his heart to regulate the excess spinal fluid. He spent a couple more weeks in the hospital, then a couple of weeks in physical rehab. He was gaining strength and his short-term memory, which had become rather shaky, was starting to return. He was released. Again. The football took a little longer to come back this time, but he was losing strength and balance. This time his return to the hospital was preceded by a fall that cracked a rib. He also had developed aspiration pneumonia; at some point he had inhaled a little bit of food into his lungs because his ability to swallow properly had gotten worse. It was the last time he would go from home to the hospital - because he never would come home again. That was in August.
The doctors decided to revise the shunt so that it would drain in to his peritoneal cavity instead of his heart. That seemed to get the fluid under control, finally. But there was a serious complication this time: blood clots. And one horrifying day, a large clot got lodged in his pulmonary artery. Most people don't survive the type of pulmonary embolism Mike had. But Mike was already in Critical Care, and a doctor and nurse happened to be in the room when he crashed. Had it taken the medical team another five minutes or so to intervene, he would have died in that hospital room. But the doctors acted fast enough to get him into interventional radiology, where they threaded IVs and electric wires through his neck directly into his pulmonary artery to break up the clot, before it was too late.
Once he was stabilized - and hooked up to a room full of machines that were keeping him alive - the doctors told us it was only a matter of time before he would have a major cardiac arrest. Their question to us was, "Do you want us to perform CPR, which can be downright violent, or let him go peacefully?" Mike's family and I spent that day in a hospital conference room, crying and praying and discussing. My sister came to prop me up through the process. Ultimately I opted not to sign the forms. I figured I owed him at least one more heroic measure. He was a fighter, and it seemed wrong to just let him slip away as long as he had any fight left in him.
Mike spent 2 weeks in a medically induced coma on life support. Machines breathed for him because his lungs were damaged by the pneumonia. But as the doctors eased up on the sedation, Mike showed signs of life. He was in there, and he was struggling to surface. The day after they woke him up, they took the breathing tube out. The day after they took the breathing tube out, they moved him to the general medical unit. He had a long way to go, but he was showing signs of progress that led the doctors to believe he was on the road to recovery. The cardiac arrest never happened, and the pulmonary embolism finally broke apart and stopped threatening his life. It was a hopeful time.
But as I said before, he would never make it home again. Mike spent the next few months moving back and forth between physical rehabs, emergency rooms, and nursing homes. He made some strides in physical therapy, but his overall condition never improved past a certain point. He was confined to a wheelchair; the right half of his body was weak, numb, and uncoordinated; he suffered from double vision; and his ability to swallow remained compromised.
That last item there? That's the reason I'm writing an "In Loving Memory" post. He developed aspiration pneumonia several times during his months following the embolism recovery, including in the final days of his life. But instead of going to the hospital when family heard the tell-tale chest rattle and nurses recorded a high fever, Mike insisted he would be fine. He adamantly refused to go to the hospital on the last day I would hear his voice. (I was not with him because I had a cold. I didn't want to get him sick. Yes, that's a regret.) And because he was coherent and capable of making decisions, nobody could make him go.
I got the call at 4:30 in the morning. The kids had to wake me up because I didn't hear my phone ringing. When I finally answered the phone, his nurse told me that she had found him unresponsive during her rounds. She said they tried to resuscitate him, but he remained unresponsive. She said they called 9-1-1 and the paramedics tried to resuscitate him, but he remained unresponsive. At this point I was numbly saying "Uh-huh" in response to everything she said, wishing she'd just hurry up and tell me which emergency room he'd been taken to. Instead, she ultimately said, "I'm so sorry. He died."
I cannot tell you how many millions of times that moment has replayed in my mind over the last two weeks. It seems so much like a distant nightmare. The whole past 9 months feel like a distant nightmare, for that matter. But the reality won't go away. I don't have my husband any more. My girls don't have their daddy. My in-laws lost a son and a brother. There is a gigantic Mike-shaped hole in the world now and there is absolutely nothing that will ever fill it. Ever.
In the two weeks since Mike left his broken body behind, there has been a tremendous outpouring of love and support from family, dear friends, and the community. God's grace and their support are the two things that have kept me from sinking to the bottom of my despair. That, and knowing that I have two little girls need me more now than ever. I want to teach them that life goes on after loss, simply because it has to.
Besides, Mike would haunt my ass if he caught me hiding under the covers binge-eating Oreos. I don't know if he's watching over us through a hole in the clouds or from a big-ol' flat-screen TV in Jesus' own man cave. But I know he's out there. I know he's free. I know he is the most healed anyone could ever hope to be. As our little Em said as soon as I told the girls the news, he doesn't need a wheelchair any more. In fact, I imagine him testing out his newfound ability to fly, swooping through the heavens going, "WOO HOO!!!!! LOOK WHAT I CAN DO!!!"
He was a good husband. He was a phenomenal father. He was loved by more people than he ever would have believed. And I will miss him every single day for the rest of my life.
Music: Alter Bridge, "In Loving Memory"
Susan and I are so sorry for you loss. Mike's surgeries certainly helped to be an inspiration to me before I had both of my surgeries. I know that it's hard, but there is peace in knowing that he is in a better place and no longer in pain. Let us know if there is anything that we can do.
ReplyDeleteBeautifully written as always. I haven't seen you guys since we were kids, but reading through his posts the weeks leading up to his death, he was sounding more coherent and more like his normal self. He showed so much concern and love for you and the girls despite how much he was struggling. I remember a post before Christmas that he thought he would die there. My heart broke, but then he pushed on and was looking better. I've thought of you guys so much in the past 9 months. My heart breaks for for you and your family, but I know you will push through this and show your girls how strong you are.
ReplyDeleteWhat a wonderful tribute to Mike. You and the girls have been in my daily thoughts and prayers. The last couple months FB for me has been solely used to stay on top of Mikes progress and most recently, to see how you are. I'm grateful for your posts and I'm glad Sassyfats is back-I missed her! YOU, my friend, are a miracle as well. Going through all of this and still having a sense of humor is nothing short of astounding in my eyes. Stay strong, baby girl...we're all here cheering you on!
ReplyDelete