It's been over 3 years now since Mike has died. The piercing pain isn't as bad but the daily thoughts are still there, thank goodness. Trying to date a man while you still wish another man were alive is a weird place to be. I find myself talking about Mike more... to the new guy.... which isn't good. I mean it isn't like a secret or anything. And of course, the right guy will understand and blah blah blah. But let me introduce myself, I'm a 50 year old grieving woman with 2 daughters who will need my constant attention for the rest of our lives. How does that sound? It sounds like I should be a lot hotter to pull all that off.
I have met some really nice men. I have considered a couple of them as a possible long term kind of guy, but as it turns out... I was the only one thinking that way. It's a bit disappointing when I run through everything in my mind and finally decide to give "this one" a chance only to discover they didn't want a chance. There was one who had lost his wife to cancer not long before I met him. I never met his kids... actually I didn't meet anyone. Odd how I didn't really notice it for about a year. We had a good time together, we had a lot in common. He was odd in the ways I liked. Then without warning....nothing..... nothing at all. No return text, call, letter or email. Short of going up to his front door, I put a good effort in to contacting him. A guy I had dated for over a year, albeit in our own little bubble just wrote me off. I've read articles where all these new terms are being thrown around in the dating world. Ghosting... that's what happened to me. But is it still ghosting if it has been over an entire year? I feel like it needs a new name.
I've tried a couple of others. This latest one was interested and would even message me in the morning, that's always the sweetest thing to me... a guy who let's me know he thinks of me when he wakes up. But then a month later.... he doesn't even respond to a text asking if he wants to come by for dinner. The next time we talk I try to balance between being nice and being pissed that he couldn't even be enough of a grown ass man to say "no thank you".
After all of these disappointments I reflect back to how things were with Mike. It is natural to remember mostly the good things, but he could also be an ass at times. Keeping that in mind, I try to make excuses for these other men.... he just needs to decompress.... he is a nice man just doesn't realize he didn't say thank you..... on and on and on....
It isn't like I'm in a big hurry to get married or have someone living with me... hell, I don't even think I could spit out the word boyfriend without cringing. But I do like being in some kind of a relationship. I would just prefer to be in one with someone with the emotional maturity to be kind in all ways.
Obviously this is more of a venting post this time. But it is also where I am in my life after Mike. I want my life with Mike back.
Thursday, December 13, 2018
Tuesday, October 30, 2018
The Grand Hotel trip came to be
Mike always encouraged me to take little trips, to expand our world a bit. His world went from being a gregarious and physical man, to confined to a bed and trying to stay connected to the world with a computer. My trips were my way of bringing the world to him through me. He looked forward to hearing of my adventures and I was more brave than I am naturally just so that I could see his face with hearing my stories.
I'm still doing these trips, even after 3 years since his passing. I still follow up my trips with going to the cemetery and telling him all about them. I can picture his face while I'm telling my stories to the wind.
The Grand Hotel had been on my radar for years and this past week was the perfect timing. I had to cancel and reschedule the trip a few times due to the girl's health and the nursing schedules. By the time I rescheduled it this last time, it was cold and rainy. But as my son said.... Mom, it was on your list to go. Having a good time is optional..... he makes me smile.
Getting there was a nice 7 hour drive with my amazon music on shuffle and trying to concentrate on the road in front of me when my eyes kept diverting to the pretty trees. I found the dock and made it to a ferry all with perfect timing. I had never taken a ferry like that before, it was too cold and rainy to stay on top so I had to go below to the seating inside. I quickly did a headcount and positioned myself near the life preservers and the exit.... just in case.... I'm brave because I'm neurotic at times. :)
My attraction to this hotel came from the movie Somewhere In Time. It is just one of those movies that stayed with me, just like Out Of Africa. I figured getting to Michigan would be a lot easier than getting to Africa, but one of these days....
When I went to the care facility to meet Mike for the first time, I walked into his room and said "You have Richard Collier's room". That he knew my obscure reference and smiled broadly at our common interest was one of the reasons I knew he was just my type. I was reminded of that memory while I was sitting in the Grand Hotel talking to a delightful man who was asking me why I was at the Hotel. Just polite conversation between strangers and yet I found myself telling him that story. I don't usually talk about Mike to strangers because I can't get used to the thought of him being dead and telling people that he is dead is still so strange to me.
The weather and the short amount of time I had there kept me inside the hotel. It truly is a grand hotel. Oh... an extra bonus.... I walked down the steps and saw so many people dressed in period costume! I was there during the Somewhere In Time weekend! I had no clue when I scheduled that that would be going on. The women looked so beautiful with all the lace and ribbons and hats and the men with their top hats. I should have felt out of place in my comfortable travel clothes that I tried to dress up slightly but still fit in my backpack, but I didn't. Every person in that room smiled back at me. Many couples brought me in to their conversations. It was such an enchanting environment.
I would like to go back to the island when the weather is warmer and drier so that I can wander around the island and explore the history there.
It was my last trip planned for 2018 and I am now planning on some of the other trips that Mike and I had talked about. He's always with me even though some of my memories of us are fading a bit, blending more and more into just one big picture.
I'm still doing these trips, even after 3 years since his passing. I still follow up my trips with going to the cemetery and telling him all about them. I can picture his face while I'm telling my stories to the wind.
The Grand Hotel had been on my radar for years and this past week was the perfect timing. I had to cancel and reschedule the trip a few times due to the girl's health and the nursing schedules. By the time I rescheduled it this last time, it was cold and rainy. But as my son said.... Mom, it was on your list to go. Having a good time is optional..... he makes me smile.
Getting there was a nice 7 hour drive with my amazon music on shuffle and trying to concentrate on the road in front of me when my eyes kept diverting to the pretty trees. I found the dock and made it to a ferry all with perfect timing. I had never taken a ferry like that before, it was too cold and rainy to stay on top so I had to go below to the seating inside. I quickly did a headcount and positioned myself near the life preservers and the exit.... just in case.... I'm brave because I'm neurotic at times. :)
My attraction to this hotel came from the movie Somewhere In Time. It is just one of those movies that stayed with me, just like Out Of Africa. I figured getting to Michigan would be a lot easier than getting to Africa, but one of these days....
When I went to the care facility to meet Mike for the first time, I walked into his room and said "You have Richard Collier's room". That he knew my obscure reference and smiled broadly at our common interest was one of the reasons I knew he was just my type. I was reminded of that memory while I was sitting in the Grand Hotel talking to a delightful man who was asking me why I was at the Hotel. Just polite conversation between strangers and yet I found myself telling him that story. I don't usually talk about Mike to strangers because I can't get used to the thought of him being dead and telling people that he is dead is still so strange to me.
The weather and the short amount of time I had there kept me inside the hotel. It truly is a grand hotel. Oh... an extra bonus.... I walked down the steps and saw so many people dressed in period costume! I was there during the Somewhere In Time weekend! I had no clue when I scheduled that that would be going on. The women looked so beautiful with all the lace and ribbons and hats and the men with their top hats. I should have felt out of place in my comfortable travel clothes that I tried to dress up slightly but still fit in my backpack, but I didn't. Every person in that room smiled back at me. Many couples brought me in to their conversations. It was such an enchanting environment.
I would like to go back to the island when the weather is warmer and drier so that I can wander around the island and explore the history there.
It was my last trip planned for 2018 and I am now planning on some of the other trips that Mike and I had talked about. He's always with me even though some of my memories of us are fading a bit, blending more and more into just one big picture.
Wednesday, September 27, 2017
Thank goodness for the ENT surgeon (sarcasm)
I had been up all night with Taylor. She didn't have any other symptoms other than a higher heart rate and just couldn't go to sleep. Sometimes that happens to her and it is usually related to her gut, but she also has neurological glitches that can contribute. The nurse came on at 8am and I went to bed. At 10:10am the nurse woke me up saying he needed help with Taylor.
I jumped out of bed and went straight to her bedroom and saw her blue and her oxygen saturation monitor was reading 17%..... you and I could hold our breath for as long as we can and still not be able to get that percentage lower than 88% at the lowest. All at once it hits that if I don't do everything exactly right she will die. There is a good chance she will die regardless of what I do. All the experiences in the past come running through my mind. First thing to do is to try to pass the suction catheter into the trachea tube and see what you can suck out. The catheter wouldn't advance. With most patients, this is when you would change the trachea tube. With Taylor, if that is attempted, she will likely die while making an attempt to prep the new tube and the success is so low that it risks her even farther (she has a false track/fistual and a malformed trachea). So that is a last resort option.
My mind switches to trying to advance the catheter with first putting saline down her trachea tube. That sounds counter intuitive since it sounds like you are drowning her, but it is my best option. The trachea tube care class that the hospital had me take when Mackenzie had her tube placed just this year taught that evidence based practice says not to use saline as a flush to thin the secretions because it doesn't work. What that study fails to consider is that the goal is not always to thin the secretions, in this case it is to move them. I was desperately hoping that using 3ml of normal saline could possibly move the thickened secretions out of the trachea tube to allow me to pass the catheter down further in the hopes of clearing the blockage. The first few attempts of this does not do anything. The next thought came from when Dr. Fitton told me when they were about 8 years old that I could use the Ambu bag to "pop" their lungs open and remove a blockage. I grab the ambu bag and have the nurse attach it to oxygen at 8 liters. It isn't enough to try to remove the blockage, I need to give her enough oxygen so her brain and organs don't become damaged/fail. When I first tried the ambu bag it wouldn't easily let me give her a breath. There was too much resistance. I went back and forth between suctioning and using the saline bullets and using the ambu bag until I finally saw some color in her face (that wasn't blue). Let me tell you too that there is nothing in nursing school that teaches you how to revive your own child. It isn't just the technique of how to suction and how to bag. It takes an intuition that can't be taught. I have to know when to switch, I have to know when to stop and assess, I have to know when too much can be too much, I have to know how to not do damage, I have to know at what pace to squeeze the ambu bag with the resistance, how much of the saline to use at what interval, how often to suction before using the ambu bag. I chose to use the suction that was inline because that was attached to her ventilator and through that circuit I had 5 liters of oxygen. Using an open suction with a 14 fr could have been more effective than the 10 fr used with the ventilator since it is bigger, but it would leave her without oxygen supplementation for too long since her oxygen saturation wasn't greater than 70 yet. The downside to using the 10fr inline catheter was because it is smaller and would take longer to clear secretions but also because the ventilator would be working against my efforst by trying to push air into her while I'm trying to suction out of her. I chose to use the 10fr because oxygen was priority. I reconsidered changing the trachea tube after 10 minutes but as long as I could advance that catheter, the new tube would do more harm than good. The other lesson that came rushing back was when I had to resuscitate Mike and I deflated his trachea tube cuff because I knew that that would allow air to move around the trachea tube. I knew that that could possibly improve Taylor's chances of moving the secretions.
I worked with her for over 20 minutes. Luckily, I wasn't alone. I could give instructions to the nurse to hook things up and to get supplies and make the call to 911 without having to take my attention off of Taylor.
When the squad arrived, they knew to let me just stay on her and not intervene unless I ask. They've been there before. Finally she started to bag easy and she started getting her oxygen saturation levels in the 90s with the 5 liters. She was stable enough to transport now. Even still transport could dislodge another mucous plug so she still wasn't completely out of danger.
Upon arriving at the hospital she was stable and smiling at me. This also means that when she presented to the ED, she was no longer looked at as critical and they made the judgement to put her on the "other side". I had to argue how volatile she was and thankfully the squad medic backed me up. They put her on the critical side.
The ENT surgeon was called to see her since assessing her airway and the integrity of her trachea was important. The ENT Resident noticed that the air was out of her cuff and put 4ml in which of course brought her VTE (air measured in her lungs while breathing) up. I hadn't put the air back in because I was still thinking that the secretions would benefit from being able to be coughed around the trachea tube if the cuff was down.
Taylor was scheduled to go into the hospital the next day to be evaluated during a switch from the ventilator she had been on for 10 years that was no longer going to be serviced by the company, to the Trilogy vent that Mackenzie is on. They decided to go ahead and admit her since they were able to have the company bring the machine in early.
We get up to the floor and a resident had decided to start her on antibiotic because her chest xray showed pneumonia and she had a temperature. Sound appropriate, except I saw the film, there wasn't a consolidation. What the resident was reading was the radiologist impression that states the same thing every single time..... pneumonia vs. atelectasis. I also knew that for 20 minutes, her lower lobes were not moving (breathing) which would make the atelectasis more noticeable but yet explained by something other than a pneumonia. Also the fever they were using as a diagnosis was 100.4. Not nearly high enough to indicate for Taylor that she was ill. It was a stress response for her. I asked for some time to let her stabilize on her own and to give the attending a chance to assess her. Luckily that discussion went in our favor. The attending assessed her and agreed that Taylor did not have pneumonia. Knowing Taylor and having the guts to piss off a doctor saved Taylor from being on a heavy duty antibiotic and extending her stay longer than she would need.
Taylor made the switch to the Trilogy ventilator without any issues! That was a relief to be sure.
The next morning while doing rounds the team of pulmonary doctors came around and reported to the attending (new one for the new day) that Taylor had a hypoxic episode but that the ENT surgeon put air in her cuff and she improved........
What a misleading statement. I usually let their reports pass by without correcting them but this time I just couldn't... I heard myself say "Yes, thank God the ENT surgeon had a 5ml syringe of air available". How can they treat her if they don't fully appreciate all that she has just gone through?
I still have my baby, that should be all that matters, but sometimes I just want to scream.
I jumped out of bed and went straight to her bedroom and saw her blue and her oxygen saturation monitor was reading 17%..... you and I could hold our breath for as long as we can and still not be able to get that percentage lower than 88% at the lowest. All at once it hits that if I don't do everything exactly right she will die. There is a good chance she will die regardless of what I do. All the experiences in the past come running through my mind. First thing to do is to try to pass the suction catheter into the trachea tube and see what you can suck out. The catheter wouldn't advance. With most patients, this is when you would change the trachea tube. With Taylor, if that is attempted, she will likely die while making an attempt to prep the new tube and the success is so low that it risks her even farther (she has a false track/fistual and a malformed trachea). So that is a last resort option.
My mind switches to trying to advance the catheter with first putting saline down her trachea tube. That sounds counter intuitive since it sounds like you are drowning her, but it is my best option. The trachea tube care class that the hospital had me take when Mackenzie had her tube placed just this year taught that evidence based practice says not to use saline as a flush to thin the secretions because it doesn't work. What that study fails to consider is that the goal is not always to thin the secretions, in this case it is to move them. I was desperately hoping that using 3ml of normal saline could possibly move the thickened secretions out of the trachea tube to allow me to pass the catheter down further in the hopes of clearing the blockage. The first few attempts of this does not do anything. The next thought came from when Dr. Fitton told me when they were about 8 years old that I could use the Ambu bag to "pop" their lungs open and remove a blockage. I grab the ambu bag and have the nurse attach it to oxygen at 8 liters. It isn't enough to try to remove the blockage, I need to give her enough oxygen so her brain and organs don't become damaged/fail. When I first tried the ambu bag it wouldn't easily let me give her a breath. There was too much resistance. I went back and forth between suctioning and using the saline bullets and using the ambu bag until I finally saw some color in her face (that wasn't blue). Let me tell you too that there is nothing in nursing school that teaches you how to revive your own child. It isn't just the technique of how to suction and how to bag. It takes an intuition that can't be taught. I have to know when to switch, I have to know when to stop and assess, I have to know when too much can be too much, I have to know how to not do damage, I have to know at what pace to squeeze the ambu bag with the resistance, how much of the saline to use at what interval, how often to suction before using the ambu bag. I chose to use the suction that was inline because that was attached to her ventilator and through that circuit I had 5 liters of oxygen. Using an open suction with a 14 fr could have been more effective than the 10 fr used with the ventilator since it is bigger, but it would leave her without oxygen supplementation for too long since her oxygen saturation wasn't greater than 70 yet. The downside to using the 10fr inline catheter was because it is smaller and would take longer to clear secretions but also because the ventilator would be working against my efforst by trying to push air into her while I'm trying to suction out of her. I chose to use the 10fr because oxygen was priority. I reconsidered changing the trachea tube after 10 minutes but as long as I could advance that catheter, the new tube would do more harm than good. The other lesson that came rushing back was when I had to resuscitate Mike and I deflated his trachea tube cuff because I knew that that would allow air to move around the trachea tube. I knew that that could possibly improve Taylor's chances of moving the secretions.
I worked with her for over 20 minutes. Luckily, I wasn't alone. I could give instructions to the nurse to hook things up and to get supplies and make the call to 911 without having to take my attention off of Taylor.
When the squad arrived, they knew to let me just stay on her and not intervene unless I ask. They've been there before. Finally she started to bag easy and she started getting her oxygen saturation levels in the 90s with the 5 liters. She was stable enough to transport now. Even still transport could dislodge another mucous plug so she still wasn't completely out of danger.
Upon arriving at the hospital she was stable and smiling at me. This also means that when she presented to the ED, she was no longer looked at as critical and they made the judgement to put her on the "other side". I had to argue how volatile she was and thankfully the squad medic backed me up. They put her on the critical side.
The ENT surgeon was called to see her since assessing her airway and the integrity of her trachea was important. The ENT Resident noticed that the air was out of her cuff and put 4ml in which of course brought her VTE (air measured in her lungs while breathing) up. I hadn't put the air back in because I was still thinking that the secretions would benefit from being able to be coughed around the trachea tube if the cuff was down.
Taylor was scheduled to go into the hospital the next day to be evaluated during a switch from the ventilator she had been on for 10 years that was no longer going to be serviced by the company, to the Trilogy vent that Mackenzie is on. They decided to go ahead and admit her since they were able to have the company bring the machine in early.
We get up to the floor and a resident had decided to start her on antibiotic because her chest xray showed pneumonia and she had a temperature. Sound appropriate, except I saw the film, there wasn't a consolidation. What the resident was reading was the radiologist impression that states the same thing every single time..... pneumonia vs. atelectasis. I also knew that for 20 minutes, her lower lobes were not moving (breathing) which would make the atelectasis more noticeable but yet explained by something other than a pneumonia. Also the fever they were using as a diagnosis was 100.4. Not nearly high enough to indicate for Taylor that she was ill. It was a stress response for her. I asked for some time to let her stabilize on her own and to give the attending a chance to assess her. Luckily that discussion went in our favor. The attending assessed her and agreed that Taylor did not have pneumonia. Knowing Taylor and having the guts to piss off a doctor saved Taylor from being on a heavy duty antibiotic and extending her stay longer than she would need.
Taylor made the switch to the Trilogy ventilator without any issues! That was a relief to be sure.
The next morning while doing rounds the team of pulmonary doctors came around and reported to the attending (new one for the new day) that Taylor had a hypoxic episode but that the ENT surgeon put air in her cuff and she improved........
What a misleading statement. I usually let their reports pass by without correcting them but this time I just couldn't... I heard myself say "Yes, thank God the ENT surgeon had a 5ml syringe of air available". How can they treat her if they don't fully appreciate all that she has just gone through?
I still have my baby, that should be all that matters, but sometimes I just want to scream.
Sunday, July 23, 2017
inspiration comes unexpectedly sometimes
I haven't been writing. In this blog or anywhere for a couple of months. Then I went to a dinner at the Columbus Museum of Art because a friend was having a behind the scenes presentation dinner showcasing his collection. I didn't know anyone except my friend, the collector, and he was busy with the room so I met the people seated at my table. One was the head docent and her husband, another couple sitting across from me, he used to own a local comic book store... a good one... Then there was an older lady who had stark white hair cut blunt like Sia's wig and bright red lips. I took to her right away, she was so engaging and interesting. During our conversation she spoke of being an author. She wrote her first book when she was 60 and her second book a few years later. I was stunned to learn that she was now 80 years old! 80 years old and still interesting and vibrant and living life on her terms. She was quite the inspiration. When I shyly mentioned that I had wanted to write a book but was so intimidated that I just started writing in a blog, she squeezed my hand and said "just write". So simple, yet so profound. She said that as long as I keep writing the book will create itself. I mentioned too that I was afraid of not getting things in the right order or remembering things incorrectly and she said "don't worry about any of that, that's what an editor is for. You just write. You write your story, your words, your memories."
So, I am writing again. My story, my words, my memories.
So, I am writing again. My story, my words, my memories.
Friday, May 5, 2017
ALS awareness month
May is deemed ALS Awareness Month. When I first met Mike, I had only a vague idea of what ALS was. I looked it up. I knew what I saw, I saw a man paralyzed, unable to breathe, unable to talk, who was still so engaging, so full of life that I was drawn to him.
I'll get real on awareness, so much more than what you see..... In 2 years of living together, I can count on one hand the number of times he had anyone visit. This man who was so well loved and so active, a man who had thousands of friends (according to facebook) rarely had anyone come say hello. Why?.... most of the time I never asked. It made people uncomfortable to ask them outright, why do you promise all these things for the world of Facebook to see, yet you do nothing? Why all the offers of help and yet no one helping? Why all the fundraisers and money raised in your name and yet nothing spent on your needs?
After Mike died, I had a strange number of people contacting me asking me if I could talk and do what I could to help, people they knew and had come across who had been diagnosed with ALS... this supposed rare disease. One woman stands out. Her husband had been diagnosed not long ago and he already had lost a lot of his ability to care for himself. I called her, not even knowing what to say really. I let her talk, I heard her saying all the things I had felt with caring for Mike. I listened to her telling a complete stranger...me....how much she hurt on a daily basis. How the county caseworkers all told her the same thing... we are working on it, we will get back to you. I could hear her reluctance to ask for help. I knew that feeling too, you have asked so many time before with no help being given, that you don't even have the will or energy to ask again. By the time we hung up the phone, I told her I would meet with her caseworker with her. Sometimes it is a real help to someone to not stand there alone, to have someone with you to hold people accountable to do the things they should be doing. I was waiting to hear from her to tell me when the appointment was scheduled. The next time I heard from her was when she sent me a message telling me that her husband was dead. I could hear the guilty mixture of grief and relief. I knew it well.
That's the reality of this disease.
Mike never got the help he was lead to believe he would get from all the money that his friends had raised to help him. He didn't get the hallway widened so that he could come into the livingroom with us. He didn't get the ramp out his door so that he could sit outside. He didn't get the lift van so he could get to doctor appointments. But the worst of it was when he couldn't get anyone here to help me care for him. The Trust he had had paid for an aide to sit with him in the nursing home when he felt that he was at risk for retaliation, but when we could no longer get an agency to take on his care, they wouldn't pay for an aide to help me here at home.
Here is another reality of this disease, it's messy, it's stinky, it strips you of your dignity. Mike had to watch me, helpless, struggle to care for him. He knew how hard it was to hold his 6'3" body on his side with one hand while I cleaned his backside and stripped his bedsheets with the other hand. He knew. He sent an email to his friends begging for help. Begging.... the man who had thousands of friends who offered to help all the time and yet he had to beg for help for his girlfriend. There goes his dignity yet again.
These friends are still raising money in his name. There is still a fund out there now giving money, a lot of money, to other football players with neurological disease. As well intentioned as the people giving the money are, I often wonder if they know that when Mike needed help the most with these funds, he didn't get them.
I don't think people know the reality of what faces most people diagnosed with ALS.... you may know on a cognitive level what happens, but does anyone realize how many thousands of people there are who chose to die simply because they don't have the money? They don't want to drain all the resources for their family. They don't even have a way of communicating anymore. They still want to be a part of the lives of their friends and family and yet piece by piece as they lose their physical abilities, they lose their friends and family. They chose to die not because they can't take the hardship of what the disease does to them physically, but because of what it does to them mentally.
Mike was strong, Mike was resilient, Mike was exceptional, Mike was forgiving, Mike was hopeful..... Mike wanted to live even with everything he had lost. He wanted to still be a positive part of the existence of all of us.
So my effort in recognizing this Awareness Month is meant to ask you all to remember Mike by helping someone. Doesn't even need to be ALS related. But don't just offer to help.... do it. It's easy to give money (when you have it), but DO something. Show up, be present, be a witness to the lives of others and give them the gift of knowing they matter. We all know people struggling, don't just type encouraging words on Facebook, don't be afraid of seeing their pain. Mike wanted fellowship. Give that.
I'll get real on awareness, so much more than what you see..... In 2 years of living together, I can count on one hand the number of times he had anyone visit. This man who was so well loved and so active, a man who had thousands of friends (according to facebook) rarely had anyone come say hello. Why?.... most of the time I never asked. It made people uncomfortable to ask them outright, why do you promise all these things for the world of Facebook to see, yet you do nothing? Why all the offers of help and yet no one helping? Why all the fundraisers and money raised in your name and yet nothing spent on your needs?
After Mike died, I had a strange number of people contacting me asking me if I could talk and do what I could to help, people they knew and had come across who had been diagnosed with ALS... this supposed rare disease. One woman stands out. Her husband had been diagnosed not long ago and he already had lost a lot of his ability to care for himself. I called her, not even knowing what to say really. I let her talk, I heard her saying all the things I had felt with caring for Mike. I listened to her telling a complete stranger...me....how much she hurt on a daily basis. How the county caseworkers all told her the same thing... we are working on it, we will get back to you. I could hear her reluctance to ask for help. I knew that feeling too, you have asked so many time before with no help being given, that you don't even have the will or energy to ask again. By the time we hung up the phone, I told her I would meet with her caseworker with her. Sometimes it is a real help to someone to not stand there alone, to have someone with you to hold people accountable to do the things they should be doing. I was waiting to hear from her to tell me when the appointment was scheduled. The next time I heard from her was when she sent me a message telling me that her husband was dead. I could hear the guilty mixture of grief and relief. I knew it well.
That's the reality of this disease.
Mike never got the help he was lead to believe he would get from all the money that his friends had raised to help him. He didn't get the hallway widened so that he could come into the livingroom with us. He didn't get the ramp out his door so that he could sit outside. He didn't get the lift van so he could get to doctor appointments. But the worst of it was when he couldn't get anyone here to help me care for him. The Trust he had had paid for an aide to sit with him in the nursing home when he felt that he was at risk for retaliation, but when we could no longer get an agency to take on his care, they wouldn't pay for an aide to help me here at home.
Here is another reality of this disease, it's messy, it's stinky, it strips you of your dignity. Mike had to watch me, helpless, struggle to care for him. He knew how hard it was to hold his 6'3" body on his side with one hand while I cleaned his backside and stripped his bedsheets with the other hand. He knew. He sent an email to his friends begging for help. Begging.... the man who had thousands of friends who offered to help all the time and yet he had to beg for help for his girlfriend. There goes his dignity yet again.
These friends are still raising money in his name. There is still a fund out there now giving money, a lot of money, to other football players with neurological disease. As well intentioned as the people giving the money are, I often wonder if they know that when Mike needed help the most with these funds, he didn't get them.
I don't think people know the reality of what faces most people diagnosed with ALS.... you may know on a cognitive level what happens, but does anyone realize how many thousands of people there are who chose to die simply because they don't have the money? They don't want to drain all the resources for their family. They don't even have a way of communicating anymore. They still want to be a part of the lives of their friends and family and yet piece by piece as they lose their physical abilities, they lose their friends and family. They chose to die not because they can't take the hardship of what the disease does to them physically, but because of what it does to them mentally.
Mike was strong, Mike was resilient, Mike was exceptional, Mike was forgiving, Mike was hopeful..... Mike wanted to live even with everything he had lost. He wanted to still be a positive part of the existence of all of us.
So my effort in recognizing this Awareness Month is meant to ask you all to remember Mike by helping someone. Doesn't even need to be ALS related. But don't just offer to help.... do it. It's easy to give money (when you have it), but DO something. Show up, be present, be a witness to the lives of others and give them the gift of knowing they matter. We all know people struggling, don't just type encouraging words on Facebook, don't be afraid of seeing their pain. Mike wanted fellowship. Give that.
Saturday, April 22, 2017
Happy.... it doesn't always come easy
Kenzie had her first follow up appointment with the ENT surgeon this week. The first time for me to send her off somewhere without me since the beginning of all of this in January. To say it was nerve wracking would be a gross understatement. I had planned on using the ambulette company who took us home from the hospital for transportation to the appointment. The driver even gave me their card telling me to give them a call when the appointment is scheduled. I called a couple days before the appointment to schedule and was told that they wouldn't schedule anything any earlier than 24 hours in advance. I called them back the day before the appointment and was then told that they don't transfer patients from a residence to an appointment. Great...... It is a covered service with our insurances but after calling 8 different companies, I came up short handed. So now I needed to change focus and find a driver and send her with a nurse but without me so I can be Taylor's nurse. Their Dad stepped up and said he would do it. That was a huge help. Now that the transportation was figured out I was free to go back to stressing over everything that could possibly go wrong. Not just with the transportation but with what could go wrong with the appointment.
It didn't help any that Mackenzie was still having issues with mucous plugs. It may not sound all that serious, it isn't like you take an expectorant and blow your nose. For Kenzie it meant that she is struggling to breathe because her mucous has thickened and dried up so much that it is stuck in her lungs blocking her airway. You will see her struggling, trying to cough, turning different colors, and watch her oxygen saturation numbers go down despite already giving her 2 liter of oxygen. Your lucky if it dislodges. I called the pulmonary office and asked if they could see her while she was there for the ENT appointment. They told me that her doctor was not seeing patients that day but that they will have her call me. Close enough...
It was now time to send her off. I packed everything you could need to try to keep someone alive and quizzed both the nurse and her Dad on what they would do if an event happened.
She made it to the appointment fine and while waiting to see the ENT surgeon I got a text from the nurse telling me that her pulmonary doctor had just stopped in to see her! She personally left her office and walked over to the other clinic and examined Mackenzie. That's incredible to me. I'm just so grateful for the willingness of her doctors to help her.
Taylor and I sat outside on the porch swing (me in the swing and Taylor in her wheelchair being pushed by my foot and the motion of the swing) in an attempt to relax and not worry so much for Mackenzie.
Once Mackenzie made it back home and I got a report from the nurse that everything went great, I felt like I took my first breath that day. The erosion is almost undetectable, the tube length is working out great and she tolerated the procedure well. They took a culture of her sputum from the order of the pulmonary physician. The pulmonary doctor called me later that same day because the ENT surgeon hadn't made any notes in her chart yet and she knew that I had questions that she deferred until they had finished scoping her airway. We talked for probably 30 minutes about Kenzie's new level of care.... what I've seen, what I've tried to do, what they have diagnosed her with...
It was the first time since Kenzie has come home that I felt like I was talking to someone who understood me and all my concerns for caring for Mackenzie. That's the other part of this... I'm alone. As many friends and family that I have that care..... I'm alone in all of this. No one has ever stood beside me and witnessed what all I have witnessed with my girls over all these years. No one has ever stood beside me and witnessed what it was like taking care of Mike. How can anyone possibly understand me? Talking with this doctor who has helped me come to grips with Taylor over the past 8 years when I had to decide to allow her trach tube and vent, was the first time that someone understood me. Lately I've had some comments from people that I am overreacting when she is fine. I can promise you I am not. I'm not perfect but I don't exaggerate. If anything I play it down so other people don't freak out and feel uncomfortable around me or my girls.
She understood my need for guidance on how to prevent things with Mackenzie and not just constantly react to traumatic events. Her airway and lungs were so damaged by that flu and what it took to keep her alive. It will be years before she is out of the woods, if ever. My daughters are fighters, they kick ass. They deserve to be as happy and fulfilled as possible to make all this fighting worth it. That's my goal. In order to do that I have to reconcile the fear with the happy. I can't get rid of either of those feelings.
I had no idea how much of my taking care of Mike would come flooding back with all these new events with Mackenzie. Let's just throw that on top of my feelings I can't get rid of. Every time I witness Mackenzie struggling to breathe, I think of Mike. I think of Mike and how there wasn't a damn thing I could do.
That's an easy concept, right? None of us are God..... blah blah blah.... but the truth is that I expect of myself every thing I can possibly give them, that's where what I do keeps them alive. It kept Mike alive longer than most thought. I worked hard to keep his blood pressure up and lungs clear and fevers down and skin integrity good for the 2 years he lived with us. It kept him alive. I was in fear of losing him plenty of times during those 2 years, but I was also happy. Happy.... that's another easy concept, right? I want it.... I want happy as much as I want healthy. That's what makes all this work. Despite all the shit that Mike and my girls have had to endure in their lives, they are and were happy. If they can live with fear and be happy, then so can I.
This entry kind of rambled. oh well.......
It didn't help any that Mackenzie was still having issues with mucous plugs. It may not sound all that serious, it isn't like you take an expectorant and blow your nose. For Kenzie it meant that she is struggling to breathe because her mucous has thickened and dried up so much that it is stuck in her lungs blocking her airway. You will see her struggling, trying to cough, turning different colors, and watch her oxygen saturation numbers go down despite already giving her 2 liter of oxygen. Your lucky if it dislodges. I called the pulmonary office and asked if they could see her while she was there for the ENT appointment. They told me that her doctor was not seeing patients that day but that they will have her call me. Close enough...
It was now time to send her off. I packed everything you could need to try to keep someone alive and quizzed both the nurse and her Dad on what they would do if an event happened.
She made it to the appointment fine and while waiting to see the ENT surgeon I got a text from the nurse telling me that her pulmonary doctor had just stopped in to see her! She personally left her office and walked over to the other clinic and examined Mackenzie. That's incredible to me. I'm just so grateful for the willingness of her doctors to help her.
Taylor and I sat outside on the porch swing (me in the swing and Taylor in her wheelchair being pushed by my foot and the motion of the swing) in an attempt to relax and not worry so much for Mackenzie.
Once Mackenzie made it back home and I got a report from the nurse that everything went great, I felt like I took my first breath that day. The erosion is almost undetectable, the tube length is working out great and she tolerated the procedure well. They took a culture of her sputum from the order of the pulmonary physician. The pulmonary doctor called me later that same day because the ENT surgeon hadn't made any notes in her chart yet and she knew that I had questions that she deferred until they had finished scoping her airway. We talked for probably 30 minutes about Kenzie's new level of care.... what I've seen, what I've tried to do, what they have diagnosed her with...
It was the first time since Kenzie has come home that I felt like I was talking to someone who understood me and all my concerns for caring for Mackenzie. That's the other part of this... I'm alone. As many friends and family that I have that care..... I'm alone in all of this. No one has ever stood beside me and witnessed what all I have witnessed with my girls over all these years. No one has ever stood beside me and witnessed what it was like taking care of Mike. How can anyone possibly understand me? Talking with this doctor who has helped me come to grips with Taylor over the past 8 years when I had to decide to allow her trach tube and vent, was the first time that someone understood me. Lately I've had some comments from people that I am overreacting when she is fine. I can promise you I am not. I'm not perfect but I don't exaggerate. If anything I play it down so other people don't freak out and feel uncomfortable around me or my girls.
She understood my need for guidance on how to prevent things with Mackenzie and not just constantly react to traumatic events. Her airway and lungs were so damaged by that flu and what it took to keep her alive. It will be years before she is out of the woods, if ever. My daughters are fighters, they kick ass. They deserve to be as happy and fulfilled as possible to make all this fighting worth it. That's my goal. In order to do that I have to reconcile the fear with the happy. I can't get rid of either of those feelings.
I had no idea how much of my taking care of Mike would come flooding back with all these new events with Mackenzie. Let's just throw that on top of my feelings I can't get rid of. Every time I witness Mackenzie struggling to breathe, I think of Mike. I think of Mike and how there wasn't a damn thing I could do.
That's an easy concept, right? None of us are God..... blah blah blah.... but the truth is that I expect of myself every thing I can possibly give them, that's where what I do keeps them alive. It kept Mike alive longer than most thought. I worked hard to keep his blood pressure up and lungs clear and fevers down and skin integrity good for the 2 years he lived with us. It kept him alive. I was in fear of losing him plenty of times during those 2 years, but I was also happy. Happy.... that's another easy concept, right? I want it.... I want happy as much as I want healthy. That's what makes all this work. Despite all the shit that Mike and my girls have had to endure in their lives, they are and were happy. If they can live with fear and be happy, then so can I.
This entry kind of rambled. oh well.......
Saturday, April 15, 2017
My daughter, the miracle and how she smiles though it all
When Mackenzie came home from the hospital with her trach and vent, I thought that I could manage her at home and we wouldn't be back up there for a very long time. The last blog tells you that that didn't happen, but then I thought ok..... she's good now. Then a week ago she started having asthma symptoms again that couldn't be managed at home. She was brought in to the hospital by squad and admitted. This is where the miracle happened.
The attending that was on that weekend was the one you want if your kid is critical. I have never doubted him, ever. Which if you know anything of me by now, I doubt everyone. He looked at her... that's what he did. He stood and looked at her. That's all he needed to do to know that she wasn't having an asthma attack that would respond to albuterol. Against what would be normal, he wanted to take her off the albuterol and instead have the pulmonary team come in a scope her airway. They did.... which is another surprise since it was on a Saturday. The Attending was in the room watching the procedure. I believe he was doing this because he wanted to make sure they found what he thought to be true. Without any indication he ordered the test that saved her life.
From the scope they were able to see that he trachea had eroded from the pressure of a trachea tube that was not a good length for her. Eroded.... let that sink in for a moment.... her trachea that needs to be intact to sustain life,..... eroded.
After that finding he asked the ENT attending to come and look at her. They did and decided that she needed to go to the OR to get a better look at her trachea and to put in another sized tube. The tube needed to be longer than the eroded area so that no pressure was placed on it causing further damage.
After the OR, they found that the erosion was more significant than originally thought. Part of her cartiledge had also eroded and right on the other side of this erosion was a major artery. If it had eroded any more, it would have hit that artery and she would have bled to death. This likely would have happened at home, with no reason to think anything was wrong.
The consulted the cardiac thoracic surgeon so if she were to need emergency surgery, they would be familiar with her. They also ordered a CT scan/ angiogram. Luckily the artery was still intact.
Now we wait..... we wait for a custom sized trach tube to be delivered and we wait for her trachea to heal enough that it wasn't life threatening. They told me to expect up to 3 weeks for it to heal.
This was on a Monday, on Friday they had the custom sized trach tube and took her back to the OR to scope her again and to put in the new sized trach tube.
The doctor came out of the OR and told me that the tube is the perfect size for her and that we can't inflate the cuff because the erosion still needs to heal....but..... it had healed in 4 days more than what he thought it would have in 20. 4 days..... in 4 days this erosion had healed enough that should could go home.
So not only was this erosion a miracle that it was found, it is another miracle that it healed so quickly.
The other finding was that in addition to this erosion, the left branch of her lungs had developed what is named bronchial malasia. It collapses with every exhale. It is theorized that this has been an undiagnosed condition for what is likely years. The only treatment is the use of the ventilator at a higher PEEP setting.... which the critical care attending physician had already done. He had already made the change to give her the treatment for what had yet to be discovered. Let that one sink in too.....
Once he told me that the only treatment was the use of the PEEP, it dawned on me that Mackenzie will not be coming off of her vent as I had previously hoped. One tear, one little tear fell from my eye. He saw it and then HE realized that that was new information for me. The next day during rounds, he very casually said.... if you were to look back on Mackenzie's chest xrays over the past 23 years, you would see that her left lower lung has been getting progressively worse. You could still make a case for her one day coming off the vent if this has been something she has been living with for years without needing ventilator support. I could have hugged him..... seriously clung to him saying nothing but thank you. He did this.... he took his time and researched this for my baby. After rounds he came back by (which is what they do there) and when I saw him walk in I just said "thank you".... His response was "I didn't just do it because you were upset". Odd thing to say right? It was the perfect thing to say. He said a lot with that one sentence.
So many times my daughters have had their life extended from this doctor. One man, one blessed man, one gifted man who pretends to not be emotionally involved .... has saved her life. We are so lucky.
The attending that was on that weekend was the one you want if your kid is critical. I have never doubted him, ever. Which if you know anything of me by now, I doubt everyone. He looked at her... that's what he did. He stood and looked at her. That's all he needed to do to know that she wasn't having an asthma attack that would respond to albuterol. Against what would be normal, he wanted to take her off the albuterol and instead have the pulmonary team come in a scope her airway. They did.... which is another surprise since it was on a Saturday. The Attending was in the room watching the procedure. I believe he was doing this because he wanted to make sure they found what he thought to be true. Without any indication he ordered the test that saved her life.
From the scope they were able to see that he trachea had eroded from the pressure of a trachea tube that was not a good length for her. Eroded.... let that sink in for a moment.... her trachea that needs to be intact to sustain life,..... eroded.
After that finding he asked the ENT attending to come and look at her. They did and decided that she needed to go to the OR to get a better look at her trachea and to put in another sized tube. The tube needed to be longer than the eroded area so that no pressure was placed on it causing further damage.
After the OR, they found that the erosion was more significant than originally thought. Part of her cartiledge had also eroded and right on the other side of this erosion was a major artery. If it had eroded any more, it would have hit that artery and she would have bled to death. This likely would have happened at home, with no reason to think anything was wrong.
The consulted the cardiac thoracic surgeon so if she were to need emergency surgery, they would be familiar with her. They also ordered a CT scan/ angiogram. Luckily the artery was still intact.
Now we wait..... we wait for a custom sized trach tube to be delivered and we wait for her trachea to heal enough that it wasn't life threatening. They told me to expect up to 3 weeks for it to heal.
This was on a Monday, on Friday they had the custom sized trach tube and took her back to the OR to scope her again and to put in the new sized trach tube.
The doctor came out of the OR and told me that the tube is the perfect size for her and that we can't inflate the cuff because the erosion still needs to heal....but..... it had healed in 4 days more than what he thought it would have in 20. 4 days..... in 4 days this erosion had healed enough that should could go home.
So not only was this erosion a miracle that it was found, it is another miracle that it healed so quickly.
The other finding was that in addition to this erosion, the left branch of her lungs had developed what is named bronchial malasia. It collapses with every exhale. It is theorized that this has been an undiagnosed condition for what is likely years. The only treatment is the use of the ventilator at a higher PEEP setting.... which the critical care attending physician had already done. He had already made the change to give her the treatment for what had yet to be discovered. Let that one sink in too.....
Once he told me that the only treatment was the use of the PEEP, it dawned on me that Mackenzie will not be coming off of her vent as I had previously hoped. One tear, one little tear fell from my eye. He saw it and then HE realized that that was new information for me. The next day during rounds, he very casually said.... if you were to look back on Mackenzie's chest xrays over the past 23 years, you would see that her left lower lung has been getting progressively worse. You could still make a case for her one day coming off the vent if this has been something she has been living with for years without needing ventilator support. I could have hugged him..... seriously clung to him saying nothing but thank you. He did this.... he took his time and researched this for my baby. After rounds he came back by (which is what they do there) and when I saw him walk in I just said "thank you".... His response was "I didn't just do it because you were upset". Odd thing to say right? It was the perfect thing to say. He said a lot with that one sentence.
So many times my daughters have had their life extended from this doctor. One man, one blessed man, one gifted man who pretends to not be emotionally involved .... has saved her life. We are so lucky.
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