Wednesdays are apparently the days for drastic change for my mom. We were admitted to the hospital on a Wednesday, and exactly 4 weeks later is when we were transferred to rehab. We are happy, and scared, and excited, and petrified for this next step. I think a lot of the fear comes from the unknown. Not knowing how she will do, not knowing how she will heal, not knowing when she will feel like herself again. I cannot believe it has been 4 weeks. It has felt like both the longest and the shortest for weeks of my life. The me who woke up that Wednesday before everything transpired seems so far away. Replaced with a little girl who cries a bit easier and who is desperately awaiting the return of normal. This is the new normal friend, time to get on board.
My mom is still really sick and because of the different meds, she spends much of her time itching and nauseous, and we are now having difficulty keeping her blood pressure high enough to get out of bed. It's frustrating because we want her to be able to take as much away from rehab as possible, and when you are puking you are not able to learn how to walk again. I want to see her get better. Now.
Hopefully I will soon acquire more patience.
Just some medical updates for those that are following and praying.
She will forever live with congestive heart failure, though we hope as she continues to improve she will only need the support of meds.
Her kidneys are still recovering, but the permanent dialysis line was removed.
She chose to have a PICC line put in. Not sure how long it will stay, but IV starts and blood draws were getting traumatic and taking at least 6 tries every time. She needed them daily. With the PICC line they can draw blood and give IV meds whenever needed.
They stopped her IV antibiotics yesterday. I'm hoping this helps with the itching. I'm nervous that she might develop an infection without them, however this is not something we want constantly pumped into her system.
We are going to continue to wait on the foot. Not sure what will happen there, but the last time I saw it the top knuckles of her toes had started to turn pink. We are cautiously optimistic. Most likely something will have to be amputated, but we will wait until there is a need and give her tissue a chance to regrow.
There is something going on with her liver. We will follow up outpatient.
She has an internal defibrillator/pacemaker. We are hoping it never has to be used, but it is there if she needs it since she went into a fatal arrhythmia in the hospital that they were not able to change through less invasive measures.
She needs to eat more, but struggles with the nausea and the fact that she eats three bites of food and calls it a meal for the past month. She has lost probably 20 lbs in the past month. She has a few meal requests if people are willing to cook small quantities :)
She is now doing physical therapy, occupational therapy, and speech therapy while in Rehab.
Rehab will most likely be 2 weeks. So possible discharge next week. That is exciting and scary. We will need help. She will hopefully be able to learn to walk with a walker but she will need someone around often. Visitors and rides to the doctors will be much needed and appreciated. Let us know if you are at all able to help :)
One glimmering awesome moment: my mom was able to shower yesterday for the first time in a month. Granted she almost passed out trying to make it back to the bed, but she showered none the less. We will take little awesome moments all day long.
On a completely different note, I want to cry my eyes out and say thank you for everyone who has helped us.
Thank you for the meals that were brought.
Thank you for the ceilings and walls that were painted.
Thank you for the plants that were dug up.
Thank you for the horrendous wall paper that was ripped down.
Thank you for the gifts you have bought for us.
Thank you for the cards that were sent to my mom.
Thank you for the help moving all of my moms earthly possessions into my garage and basement.
Thank you for the prayers.
Thank you for the encouragement.
Thank you for holding onto hope when we couldn't.
Thank you for not expecting us to walk around happy.
Thank you for holding me when I cried.
Thank you for the offer of rides down the line.
Thank you for loving me, my family, and my unborn babe.
I don't think we can say thank you enough. This is a crappy road to walk and I cannot imagine how it must feel for those who have to walk it alone. I am learning more and more that life is meant to be lived within a community. We are so grateful to have the love and support of our family, friends, and community. People who have known us for a long time, and people who are just hearing our story now. Thank you for coming along side us. We have a lot more walking to do, but I would rather have a long walk together than a short one all alone. God is still good. My mom is still here. And we will chose to keep putting one foot in front of the other.
Last tangent. We were supposed to have our annual Goat Fest on August 4th but it has been cancelled. We would love to just postpone it and do it in the fall, but we are not sure what that looks like with the impending birth of our child in October. So for right now it is on hold, and we will hopefully be able to throw a rocking party next year.
Saturday, July 28, 2012
Friday, July 20, 2012
Waiting
Part of me wanted to wait to write anything until I had some really awesome, good news. So instead I just haven't written anything, honestly because I just don't know what to say. Waiting is hard. Living day by day is hard. I am a die hard planner, and I can't tell you what is going to happen tomorrow. Living in this limbo land is taking a toll on all of us, including my mom.
I wish we could all stomp our feet and take a break. Make this go away for just a little bit. Give her a different view besides the parking lot for an hour. In the beginning we were just grateful for her to be alive, and now we are starting to grieve the life we won't necessarily get back. This life may be more rich, more meaningful and better, but it is unknown, hard, and scary. So we will keep marching, and learn to figure how to play these cards we were dealt.
We are waiting still to make a plan on her foot. There was a chance nothing would happen during this hospitalization, but I'm starting to wonder if they will move forward before she goes to rehab. In the meantime we are trying to get her cleared for rehab to start early next week. She has not needed dialysis in the past 6 days, so we are hoping they can remove that line before she goes as well. Good little steps, but not the big leaps and bounds that fuel you to keep running. Running is so much more fulfilling than this steady pace jog.
Just a side funny note that I want to make sure I don't forget. My mom's main cardiologist we lovingly have referred to as Dr. "Carefree." Nothing ever seemed like a big deal, until he was all frazzeled before she tanked. He was also pretty socially stone cold as well. Whatever, if you are smart and can take good care of my mom I don't really care how awkward you are. Well once my mom learned a little bit of what happened to her, she reached for his hands and genuinely thanked him for saving her life the next time she saw him. He squirmed with the physical contact and I about died laughing on the inside and then on the outside when he walked out and she let me in on the fact that she just liked messing with him. Well wouldn't you know, he reached for her hands the next day he saw her.
My mom is constantly waffling between the up and down. And I do my best to not try to cheer her up and fix it. She is entitled to her bad days, and her tears. And really, I can't fix it. I can just be there and cry with her when she needs someone else to sit in the shit with her.
So today I will bring her the back scratcher I bought so that she can relinquish the butter knife she kept from her breakfast yesterday. I will wash her hair because it is about 20 minutes worth of heaven in her eyes. I will put lotion on her skinny little Joannie chicken legs that she now rocks. And I will cry again with her if that is what she needs.
At the risk of being stalked, I would love it if we could overwhelm my mom with cards of love, funny stories, and honest encouragement. The situation does suck a bit, but it sucks a little less when you know you are not fighting alone. I will deliver all of them to her. Promise.
244 N Hamlin Ave.
Park Ridge, IL 60068
Would you keep praying? Pray for her foot, that the best decision would be made and that we would all have peace about it. Pray for her spirit and for God to be even more present. Pray for her itching, as it is driving her insane. Pray that we would financially know how to manage this and be able to take care of her. Pray for God's provision, because right now I cannot see a good solution to many of the things we will face. Pray that all of us would be able to take care of ourselves while we care for her. Pray for fuel and energy, as we all hit our different walls. God is big enough, so I will trust in that.
I wish we could all stomp our feet and take a break. Make this go away for just a little bit. Give her a different view besides the parking lot for an hour. In the beginning we were just grateful for her to be alive, and now we are starting to grieve the life we won't necessarily get back. This life may be more rich, more meaningful and better, but it is unknown, hard, and scary. So we will keep marching, and learn to figure how to play these cards we were dealt.
We are waiting still to make a plan on her foot. There was a chance nothing would happen during this hospitalization, but I'm starting to wonder if they will move forward before she goes to rehab. In the meantime we are trying to get her cleared for rehab to start early next week. She has not needed dialysis in the past 6 days, so we are hoping they can remove that line before she goes as well. Good little steps, but not the big leaps and bounds that fuel you to keep running. Running is so much more fulfilling than this steady pace jog.
Just a side funny note that I want to make sure I don't forget. My mom's main cardiologist we lovingly have referred to as Dr. "Carefree." Nothing ever seemed like a big deal, until he was all frazzeled before she tanked. He was also pretty socially stone cold as well. Whatever, if you are smart and can take good care of my mom I don't really care how awkward you are. Well once my mom learned a little bit of what happened to her, she reached for his hands and genuinely thanked him for saving her life the next time she saw him. He squirmed with the physical contact and I about died laughing on the inside and then on the outside when he walked out and she let me in on the fact that she just liked messing with him. Well wouldn't you know, he reached for her hands the next day he saw her.
My mom is constantly waffling between the up and down. And I do my best to not try to cheer her up and fix it. She is entitled to her bad days, and her tears. And really, I can't fix it. I can just be there and cry with her when she needs someone else to sit in the shit with her.
So today I will bring her the back scratcher I bought so that she can relinquish the butter knife she kept from her breakfast yesterday. I will wash her hair because it is about 20 minutes worth of heaven in her eyes. I will put lotion on her skinny little Joannie chicken legs that she now rocks. And I will cry again with her if that is what she needs.
At the risk of being stalked, I would love it if we could overwhelm my mom with cards of love, funny stories, and honest encouragement. The situation does suck a bit, but it sucks a little less when you know you are not fighting alone. I will deliver all of them to her. Promise.
244 N Hamlin Ave.
Park Ridge, IL 60068
Would you keep praying? Pray for her foot, that the best decision would be made and that we would all have peace about it. Pray for her spirit and for God to be even more present. Pray for her itching, as it is driving her insane. Pray that we would financially know how to manage this and be able to take care of her. Pray for God's provision, because right now I cannot see a good solution to many of the things we will face. Pray that all of us would be able to take care of ourselves while we care for her. Pray for fuel and energy, as we all hit our different walls. God is big enough, so I will trust in that.
Wednesday, July 4, 2012
One Week Later
It was one week ago that my story changed. It was one week ago that I had the hardest day and night of my life. It was one week ago that I reached out for support in a way I never have.
You can see the results of the last week on my body. You can see my now cresent swollen eyes, with circles under them that concealer doesn't even touch. You can see my swollen feet both from being pregnant but also from pushing myself a bit more than I should have. You can see my raw nose from using too many cheap hospital Kleenex. Up until yesterday you could see that my hair even went a little gray-er, but luckily a friend came over and fixed that problem.
But beyond all that I wish you could see my heart. I feel like it was ripped out, stepped on, and then shoved back inside. But through all the trauma, I feel like God held it together. It might be bruised and battered, but it is still beating, and so is my mom's.
Yesterday was a rough day for me. While my mom was doing better physically, you could tell she was getting emotionally tired. I can't imagine being stuck inside my body, without sedation and unable to talk for two days. This process has taught me more and more of what I take for granted and what really matters. My mental goal for the day was to get the breathing tube out. Based on the vent settings and conversations I had with the nurses the previous day, I wasn't really sure why it was still in and didn't feel as though I was given a good answer for it either. I was frustrated and ready to kill someone. If one more person walked in and suctioned out my conscious mom's lungs without giving her a warning, I was ready to take that tube and shove it somewhere else. It was one of those days. I felt mentally and emotionally done, and I was angry that while I could decide to throw in the towel and call it a day, my mom had no such option. I was no longer in the mood to play nice and if my mother can't advocate for herself, then you bet your ass her family will.
Because the balloon pump was going to come out, they wanted to wait to take out the breathing tube until after that was done. It is easier for that tube to come out once you can sit up and take a deep breath. I get that. I could get on board with that plan. But then it took until 530 to get the balloon pump out because her liver wasn't able to clear the anticoagulant out of her system in a normal amount of time. One of the nurses had told me they never extubate at night in case something goes wrong, because they are less resources. So when the balloon came out at 530 and I knew she had to lay flat for 5 hours, I felt defeated. I felt like I had fought all day for nothing. Even if my mom's spirit could take one more night of that, even if it wasn't a medical necessity, I didn't think I could. My sisters came up to the hospital and I decided to leave. I felt like I was out of my fight.
Maybe that was God's plan all along. Maybe I needed to learn that I didn't need to fight alone, or that others are on my side and fighting too. I left the hospital around 630. Balloon pump was out and her chest tubes were going to come out next. At 745 my sister texted me saying that she really liked the night nurse and that she was going to be extubated tonight. So I sobbed my face of with excitement for my mom and with sadness for not being able to be there. To not be able to hear her second, first words. I know that sounds a bit ridiculous, but our goal by the doctors was to live through the weekend. I think I spent those five days mentally preparing for the very real possibility of losing my mother. I didn't know if she was ever going to tell me something again. While she had written some things down on paper, I didn't know if my whole momma's mind was still in that head. I didn't know if she would still have the spirit to fight when we took away all the support. I didn't know how broken her heart would be, beyond the physical, which I knew all too well.
But according to my sisters, she is still in there. She bargained for two ice chips last night almost immediately after the tube was removed, once she realized she wasn't going to get that one inch of water. She told my sisters that she loves them. And she could tell people what she needed. It must have been the most beautiful whisper my sisters had ever heard. I can't wait to hear it for myself this afternoon.
So I guess my goal was accomplished, even if it wasn't in the way I thought it was going to happen. I'm learning that God is big enough and that I am not alone, and that I do not have to fight alone. I'm learning its OK to rest a bit, and to remember I am pregnant.
In my super honest talks with friends and family, I have said how I want a first pregnancy redo. Because in the past month I have really kind of forgotten about being pregnant and not focused on it at all. But today I am able to see, that while I might not have had the giddy focus on my growing belly, I have learned so much more about life and myself that I can now teach my sweet babe to be. I have grown up and been given more perspective. I wish it was easier to gain such things when life is easy and I am running forward with full steam ahead. My tendency is to run through life, accomplishing as much as possible, and slowly God is teaching me that this is not how life is meant to be lived. It's not just about painting a cute nursery and buying cute maternity clothes. It's not about having all that crap you are told you need at BuyBuyBaby. It's about creating a world for my baby where they learn what really matters. It's about focusing on those first words. It's about the first time my mom asked me to come close yesterday so that she could rub my growing belly. It's about letting my guard down and allowing people to be on our team, to influence our lives for the better, and then also our child's.
Please continue to pray for my mom. She has a really rough and long road ahead of her. I am so excited for how far we have come, but we still have a long way to go and I want to know she has people fighting for her, praying for her, and supporting her. We still have things to work through with her foot and my mom has not moved her own body in the last week. She has been incredibly deconditioned and the heart took a big blow. We have not yet been given a plan or an idea about what her rehab looks like. I think she surprised everyone by her improvements in the past couple of days. So as we navigate these waters, pray for us. Because God will continue to be faithful, as he has demonstrated in the past week.
I just want to reiterate that God would still be the same faithful and good God if my mom went to heaven last week. There have been so many highs and lows, and I am learning to trust. Trust that God's plan is good and true, even when it doesn't make sense to us. So I will trust that she is meant to be here, and I will continue to love, support, and fight for that. I am grateful for that. And I am scared of the journey that lies ahead. One moment and one day at a time, I hope my family and my mom can take this on with grace. That we can be a living example of hope. We will have our ugly moments, because we are real and we are human, but I pray that overall, we will be an open story of hope for others.
My sister just texted. I need to go update people that the dialysis tube is out. Happy Independence Day. Grateful does not begin to describe my current state.
You can see the results of the last week on my body. You can see my now cresent swollen eyes, with circles under them that concealer doesn't even touch. You can see my swollen feet both from being pregnant but also from pushing myself a bit more than I should have. You can see my raw nose from using too many cheap hospital Kleenex. Up until yesterday you could see that my hair even went a little gray-er, but luckily a friend came over and fixed that problem.
But beyond all that I wish you could see my heart. I feel like it was ripped out, stepped on, and then shoved back inside. But through all the trauma, I feel like God held it together. It might be bruised and battered, but it is still beating, and so is my mom's.
Yesterday was a rough day for me. While my mom was doing better physically, you could tell she was getting emotionally tired. I can't imagine being stuck inside my body, without sedation and unable to talk for two days. This process has taught me more and more of what I take for granted and what really matters. My mental goal for the day was to get the breathing tube out. Based on the vent settings and conversations I had with the nurses the previous day, I wasn't really sure why it was still in and didn't feel as though I was given a good answer for it either. I was frustrated and ready to kill someone. If one more person walked in and suctioned out my conscious mom's lungs without giving her a warning, I was ready to take that tube and shove it somewhere else. It was one of those days. I felt mentally and emotionally done, and I was angry that while I could decide to throw in the towel and call it a day, my mom had no such option. I was no longer in the mood to play nice and if my mother can't advocate for herself, then you bet your ass her family will.
Because the balloon pump was going to come out, they wanted to wait to take out the breathing tube until after that was done. It is easier for that tube to come out once you can sit up and take a deep breath. I get that. I could get on board with that plan. But then it took until 530 to get the balloon pump out because her liver wasn't able to clear the anticoagulant out of her system in a normal amount of time. One of the nurses had told me they never extubate at night in case something goes wrong, because they are less resources. So when the balloon came out at 530 and I knew she had to lay flat for 5 hours, I felt defeated. I felt like I had fought all day for nothing. Even if my mom's spirit could take one more night of that, even if it wasn't a medical necessity, I didn't think I could. My sisters came up to the hospital and I decided to leave. I felt like I was out of my fight.
Maybe that was God's plan all along. Maybe I needed to learn that I didn't need to fight alone, or that others are on my side and fighting too. I left the hospital around 630. Balloon pump was out and her chest tubes were going to come out next. At 745 my sister texted me saying that she really liked the night nurse and that she was going to be extubated tonight. So I sobbed my face of with excitement for my mom and with sadness for not being able to be there. To not be able to hear her second, first words. I know that sounds a bit ridiculous, but our goal by the doctors was to live through the weekend. I think I spent those five days mentally preparing for the very real possibility of losing my mother. I didn't know if she was ever going to tell me something again. While she had written some things down on paper, I didn't know if my whole momma's mind was still in that head. I didn't know if she would still have the spirit to fight when we took away all the support. I didn't know how broken her heart would be, beyond the physical, which I knew all too well.
But according to my sisters, she is still in there. She bargained for two ice chips last night almost immediately after the tube was removed, once she realized she wasn't going to get that one inch of water. She told my sisters that she loves them. And she could tell people what she needed. It must have been the most beautiful whisper my sisters had ever heard. I can't wait to hear it for myself this afternoon.
So I guess my goal was accomplished, even if it wasn't in the way I thought it was going to happen. I'm learning that God is big enough and that I am not alone, and that I do not have to fight alone. I'm learning its OK to rest a bit, and to remember I am pregnant.
In my super honest talks with friends and family, I have said how I want a first pregnancy redo. Because in the past month I have really kind of forgotten about being pregnant and not focused on it at all. But today I am able to see, that while I might not have had the giddy focus on my growing belly, I have learned so much more about life and myself that I can now teach my sweet babe to be. I have grown up and been given more perspective. I wish it was easier to gain such things when life is easy and I am running forward with full steam ahead. My tendency is to run through life, accomplishing as much as possible, and slowly God is teaching me that this is not how life is meant to be lived. It's not just about painting a cute nursery and buying cute maternity clothes. It's not about having all that crap you are told you need at BuyBuyBaby. It's about creating a world for my baby where they learn what really matters. It's about focusing on those first words. It's about the first time my mom asked me to come close yesterday so that she could rub my growing belly. It's about letting my guard down and allowing people to be on our team, to influence our lives for the better, and then also our child's.
Please continue to pray for my mom. She has a really rough and long road ahead of her. I am so excited for how far we have come, but we still have a long way to go and I want to know she has people fighting for her, praying for her, and supporting her. We still have things to work through with her foot and my mom has not moved her own body in the last week. She has been incredibly deconditioned and the heart took a big blow. We have not yet been given a plan or an idea about what her rehab looks like. I think she surprised everyone by her improvements in the past couple of days. So as we navigate these waters, pray for us. Because God will continue to be faithful, as he has demonstrated in the past week.
I just want to reiterate that God would still be the same faithful and good God if my mom went to heaven last week. There have been so many highs and lows, and I am learning to trust. Trust that God's plan is good and true, even when it doesn't make sense to us. So I will trust that she is meant to be here, and I will continue to love, support, and fight for that. I am grateful for that. And I am scared of the journey that lies ahead. One moment and one day at a time, I hope my family and my mom can take this on with grace. That we can be a living example of hope. We will have our ugly moments, because we are real and we are human, but I pray that overall, we will be an open story of hope for others.
My sister just texted. I need to go update people that the dialysis tube is out. Happy Independence Day. Grateful does not begin to describe my current state.
Sunday, July 1, 2012
The roller coaster ride
Stop reading now if you can't tolerate my gut level honesty. I'm hoping by telling my story I can start to let it go and continue to lift it up to God because I am not strong enough to go through this situation on my own. I am telling my story because I think that lives are meant to be shared, and while I want to run away and walk this road all alone, the little voice inside of me is begging for people to understand, and desperately scared that when we are through the crisis mode that there will no longer be the outreach and the prayers and support. I am telling my story because I think by putting it down, I can stop reliving it, or that the blow might be a little softer. Maybe it won't, but I'm choosing to share, and choosing to hope. Right now that feels like some of the only choices I really want to make.
This has been the worst week of my life. Yet, through the tears, the panic, the hugs, the prayers, and the ugly cries, God has been close. There are some really hard things that I want to remember, because it reached to the deepest level of my humanity. It touched the parts of my soul that only heaven can reach.
My mom went home from the hospital last weekend after her massive heart attack. While it was a daunting thing to say, we made it by with angioplasty, a stent, and a balloon pump for a few days... So it didn't feel that massive. Life altering and changing, yes, but doable. We were set up for a follow up appointment and planned on starting some cardiac rehab. It was a hard start to the week, as this was a really new normal for my independent and stubborn mother. Tuesday was by far her best day, both physically and emotionally and honestly I had started to feel kinda hopeful about the direction she was going. I felt like my family was stepping up, I was learning how to take care of myself, while loving my mother, and she was starting to step in as her own advocate.
When I got to her house Wednesday morning to sleep for a little bit before joining her at the cardiologist appointment, she looked like crap. Granted, she hadn't slept in days and she was still attributing her back pain to the crappy hospital beds. So we headed to the appointment at 11:00, where she started to look a little worse and worse. With all the medications she had been on, her pulse should have been under 70, and instead it was 110-120. A new EKG in the office and a new Echo showed a pericardial effusion. Honestly, I am really frustrated about this. Why was taking your pulse not part of discharge teaching? There were so many other things she was doing on a daily basis, why wasn't this included?
Now I need you to know from the beginning that we are not a "blame" kind of family. Regardless of any outcome, I can never see my family or my mother suing the hospital system. Doctors and nurses are human, and sometimes things just happen. However, I think it is O.K. for me and everyone at times, to get angry and sad at the holes where the system falls short.
Even at this time I don't think anyone realized the severity of the state my mom was in. We were allowed to drive her to the hospital and she was a direct admit to a telemetry floor. The plan was to do a repeat angiogram and remove the fluid around her heart with a needle through the chest. Not the most fun day, but not the end of the world either. She was bummed she would have to spend the night in the hospital. I was too.
It was heart wrenching to watch my mom receive this news. I am more scared for her spirit to be broken than her heart at this point.
At the hospital there was no urgency. We waited in admitting for a while, then waited for them to start an IV up on the floor before she could go to the cath lab. While her back pain was getting increasingly worse, since there was a plan in place, no one seemed to think much more of it. I told the love of my mom's life to meet up with his daughter for lunch, because really we just had a bunch of tasks to do and it would be better if people were there after the procedure was done, and I had time now to stay. Because while this stunk to be back, it really wasn't that big of a deal.
So my mom and I hung out in her room. I got mad as the nurse told me they don't draw the labs off the IV starts and proceeded to stick her multiple times. Sometimes it is a blessing to be a nurse, sometimes it is a curse, when you know enough to know things can be better, but also wanting to respect that this is not my specialty and I don't want to upset the people that are caring for my mom.
As we are waiting for our turn in the cath lab, my mom looked at me and asked me if I would pray for her because she was really scared. Red flag. Cardiac patients and fear are usually never a good combo.
How I made it through that prayer is beyond me, because even typing right now I want to ball my eyes out. I will forever cherish that little moment between her and I, where she let her guard down as my mom and let me into a deeper part of her soul. My mom and I have always been close, but fear is not something she expresses on a regular basis. I tried to conceal my new found fear and expressed to the nurse how much pain my mom was having. She put a call out to the NP who said she would be well medicated in the cath lab and to wait. So we did. Not long after that my mom went over to the cath lab, signed her consents and headed on in. My restaurant buzzer and I went to sleep in the waiting room where Judge Judy was screaming too loud at obnoxious people on TV. I wasn't able to sleep and kept debating about calling into work as I had been up for way to long at this point. Eventually I got to the place where I could sacrifice some PTO and decided I would just stay awake right now for my mom and stay home tonight to get some sleep.
When I called into work and explained what happened, I realized how little I was trying to make the situation. I didn't want to admit my fear that we were back here, in this place, with the unknowns again. I wanted to write off the cath lab as a routine procedure, because surely we would go home tomorrow and this wasn't a big deal.
Around 5:15 my buzzer went off. I walked back to the cath lab ready to see my mom, where I instead saw two chairs behind a curtain. My heart sank. The panic and the fear washed over me as the doctor who we jokingly referred to as Dr. "Carefree" came out of the next room. He was frazzled asking for me to sign consents for them to immediately take my mother back for open heart surgery. They were unable to aspirate the fluid off of the heart because she developed a rare phenomenon called "Dresslers Syndrome." And while he and another Dr. tried to aspirate the fluid, she went into cardiac tamponade and dropped her pressures. He said we were lucky that she declared herself here, because she would not be alive if this had happened outside of the hospital.
So I signed my name to the forms and walked next to her as we all quickly got back to the OR. I gave her a kiss at the elevator and told her that I loved her. And she told me she loved me back. I quickly turned around and lost it as I made my way to the waiting room where we had spent too much time in the previous week. I texted my family to make arrangements to come to the hospital now, and I prayed. A lot. I am lucky Jon didn't get a speeding ticket or crash the car. Because apparently, when you text "come now." He takes it very seriously. And honestly, it was that serious, I just didn't want to admit it.
I eventually put the post up on facebook that my mom was in need of prayers, and throughout these last few days I have let the walls fall that I want to put up to keep everyone around me away. I know everyone wants to help, and I know I don't want to walk this journey alone...but I don't know how to let people walk next to me too well either. I don't know how to tell you what I need, because what I want are things you cannot give me, and at this point I am no longer sure what a need is.
Waiting rooms suck. Waiting sucks. Limbo sucks. When the cardiologist walked in after the surgery, we were told she was alive and how serious it was. He did not paint a good picture. The cardiac surgeon came in after him and told us that the goal was to make it through the next 24 hours. Each hour she made it increased her chances of survival. I never thought hours could move so slowly.
As we waited for them to get my mom situated in the CVICU, we all collapsed. Emotionally and physically. I am grateful for the strength God gave me to say a prayer and to hold my sisters as they sobbed in my arms. I am grateful for the people that held me up as I fell apart. I am sure the pain and the fear and the anger will continue to wash over me, and for the first few days I focused as much as I could on the facts and what needed to be done. I wanted to forget that was my mother in that bed. I wanted to just stare at the screen and dissociate from everything and everyone around me. I wanted to either run away or run into that bed and lay next to her. Neither of which were really options.
I will be forever grateful that we made it through that night.
As my mom coded 3 times and was shocked over 20 times throughout the night, I stood in the corner and prayed. I know the research that says some people do better if they see a code to know that everything was done for their family member, where as others it can be traumatic. I'm a watcher. I wanted to make sure things were done, and they were done right. I also wanted to have me feet firmly planted there in case someone needed to jump in to yell stop. My mom and I have similar beliefs about life, and one of them is quality over quantity. So I prayed that if this was supposed to be the end, that God would take her. That the pain would stop, that the chest compressions could cease over her broken sternum. I know she would have no recollection of the event and took great comfort in that. I also took comfort in the fact that so many of my friends down in my unit heard those calls over the loud speaker and could pray on the spot. I wasn't alone. My mom, wasn't alone.
Honestly, I thought my mom was going to die that night. And honestly, it would have been easier if she had. Please don't take that the wrong way. It wouldn't be better, but it would be easier, because the grief process could start and I could start to make some peace. I could take comfort that there would be no more pain or suffering and that the hands of God wrapped around her heart and took her home. I'm sure she will tell you the same thing when she comes around. She knows her ultimate destination, and the road that now lies ahead of her is anything but easy, but I am grateful that God is still in this road with us. I'm grateful that his hands are still around her very weak heart, and I'm grateful for the moments I have had since that time where I could again see my mom inside that broken body.
For some reason, this was not yet her time. God did not intervene, and I did not yell for them to stop. I prayed for God's wisdom and his will, and I sobbed my face off after we had made it for 3 hours without a code and I finally fell asleep for a bit.
On Thursday we all continued to run on no sleep and took turns sitting at my moms bedside. It was this day that they turned the sedation down for the first time and I got to see that even after all those codes, my mom was still inside. Thursday was a long day, and it was starting to dawn on me that this hospital experience will be nothing like the last. We will not be able to leave in a week, if we are able to leave at all. They started to lose the pulses in her right foot and decided to take her back to the cath lab to see if there were any clots as well as to move the balloon pump to the other side. I'm scared that it is my name on all of those consent forms. I'm scared, because when I signed them, I have never been presented with any other option. It is in that moment that the doctors make a game time decision, and I am expected to get on board. There is no guarantee of a good outcome or the road ahead. With every consent I sign, I get more scared that my mom will be alive, but will not be able to live. This is my greatest fear.
After making it through the cath lab I got a phone call Friday night again asking for a consent. This time to start dialysis and place the line for that. I was more than on board with that plan as the swelling everywhere kept my mom from opening her eyes and looked absolutely awful and uncomfortable. By Friday morning, the nurse again called me and said things had kind of taken a turn for the worse. Earlier in the day she was only able to keep her oxygen saturation levels up to the upper 80's. Now they were only up to the low 80's and they could not find a definitive cause. While she might have had a blood clot by her lungs, they could not give her any blood thinners because she had a bleed after the cath lab procedure.
Again a step back, and again my heart sank. So I called extended family and got the word out that people may want to come see her. We spent a lot of time waiting and crying. I felt bad knowing my mom would hate to have people see her like this, but also knowing that people deserve to say "I love you," and "good bye." And since we were still being told that we were critical and no where out of the woods, this turn in the opposite direction seemed like a good time to start that process. That day I settled into my sadness and fear. It sucked. But as I have said before, sometimes you just need to "sit in the shit." There is no way out of through it, until you fully acknowledge it and embrace it. This is just where we are at.
When they turned the sedation down that morning I had a few minutes where there was only my cousin in the room. My mom nodded some appropriate responses to questions people had previously asked, and although I know she won't remember it, I had to tell her that I had her back. She kept pointing to the tube and asking for it to come out. I explained how right now everything was temporary, and that the tube would come out. And I promised that if it wouldn't, I would tell them to turn it off and let her go. I tried to hold back the tears as I promised my mom we would let her go if we were no longer heading in the right direction. I knew my mom was in there as she squeezed my hand and the tears streamed down her face. I'm sure every time she woke up she was afraid that she would be trapped like this forever. Stuck without words and without communication. At the time unable to open her eyes and barely able to lift a hand, and I wanted to make sure she knew she wasn't stuck. I wanted her to know that if there was no hope, we would let her go to her ultimate home.
That was the hardest conversation I have had my entire life, but it was also one of the most meaningful. I got your back mom. Forever.
The pastor that married us, and who is also my friend's dad offered to come pray with my mom and with us. So that afternoon I asked the nurse if we could turn down the sedation when he was there so that she could hear the prayer. We got permission to have more than two people at the bedside, and I held my family close and my mom's hand tight, as we prayed a big prayer. I am grateful that he prayed not only for survival but for her soul. For God's healing, and peace, and comfort. Because in these moments, that feels even more important to me than her temporary body.
Jon and I escaped the hospital for a little while and when we returned we found out that they had turned my mom to change the bed after out prayer, and when they did, she was able to put a lot of fluid out of her chest tube and her numbers drastically shifted. He blood pressure increased on its own some, and her pulse ox moved the upper 90's. God is good. Oxygen to other vital organs is good. And it felt good that all the nurses talked about how this all happened right after our prayer. I am grateful that God made his presence and his plan known. I needed that. I needed some hope. I needed something to celebrate.
Since Friday night my mom had continued to improve. She remained more aware and awake even through the sedation. She was able to give up some of the blood pressure meds, and we were able to hold on to a slightly thicker thread. It started to feel like we were living in half day increments instead of hour increments. Jon and I headed up to the hospital last night to be able for me to have some time alone with my mom. I'm not so good at waiting in a waiting room, but I can sit by that bed all night long. Not long after we got there we got the results that showed she was getting no blood flow to her right foot and a large portion of her leg. So I again signed my name to the form and she went back to the cath lab to see if they could save her leg. I know that big picture, her life is the ultimate goal, but I want my whole mom back. I want my active mother back. I want my mom to be able to walk into my house, and while we will cope with and embrace a new normal if we have to, I do not want to.
So this is where we sit. Her kidneys have started to turn back on, and I have never been so excited for pee in my life. Her oxygen levels are good and we are hoping we can remove the breathing tube in the next 24 hours. We are still working on our goal to make it through the weekend. Her leg is slightly better, but she needs to start having pain for us to know if it is coming back. They are still having trouble keeping pulses in her feet, and we should know more in the next 24 hours on if her leg will make it.
I am so thankful for all God has done to this point. But I need so much more. I need more hope, I need more faith, and I need more of his strength. I need wisdom for how to continue to invest in my marriage over the coming months that will be difficult and trying. I need to know how to take care of my pregnant self and my unborn baby. I need to know when to just sit with my mom and let her cry and when to push her. I need to know God is here, and that he is still good. I need this roller coaster ride to be over, or at least to be able to take a break before I vomit on everyone. So will you please pray for that and will you please pray for my mom's leg and foot. God is big enough and his will is good.
Thanks for listening to my story. Thank you to my coworkers who have given me a place to shower, sleep, and cry. Thank you for the offers of food and help, even if I have not yet been able to take you up on it or return your message. Thank you for just showing up, even when I didn't ask. Thank you for calling to check in on me, even if I ignored your call. Thank you.
This has been the worst week of my life. Yet, through the tears, the panic, the hugs, the prayers, and the ugly cries, God has been close. There are some really hard things that I want to remember, because it reached to the deepest level of my humanity. It touched the parts of my soul that only heaven can reach.
My mom went home from the hospital last weekend after her massive heart attack. While it was a daunting thing to say, we made it by with angioplasty, a stent, and a balloon pump for a few days... So it didn't feel that massive. Life altering and changing, yes, but doable. We were set up for a follow up appointment and planned on starting some cardiac rehab. It was a hard start to the week, as this was a really new normal for my independent and stubborn mother. Tuesday was by far her best day, both physically and emotionally and honestly I had started to feel kinda hopeful about the direction she was going. I felt like my family was stepping up, I was learning how to take care of myself, while loving my mother, and she was starting to step in as her own advocate.
When I got to her house Wednesday morning to sleep for a little bit before joining her at the cardiologist appointment, she looked like crap. Granted, she hadn't slept in days and she was still attributing her back pain to the crappy hospital beds. So we headed to the appointment at 11:00, where she started to look a little worse and worse. With all the medications she had been on, her pulse should have been under 70, and instead it was 110-120. A new EKG in the office and a new Echo showed a pericardial effusion. Honestly, I am really frustrated about this. Why was taking your pulse not part of discharge teaching? There were so many other things she was doing on a daily basis, why wasn't this included?
Now I need you to know from the beginning that we are not a "blame" kind of family. Regardless of any outcome, I can never see my family or my mother suing the hospital system. Doctors and nurses are human, and sometimes things just happen. However, I think it is O.K. for me and everyone at times, to get angry and sad at the holes where the system falls short.
Even at this time I don't think anyone realized the severity of the state my mom was in. We were allowed to drive her to the hospital and she was a direct admit to a telemetry floor. The plan was to do a repeat angiogram and remove the fluid around her heart with a needle through the chest. Not the most fun day, but not the end of the world either. She was bummed she would have to spend the night in the hospital. I was too.
It was heart wrenching to watch my mom receive this news. I am more scared for her spirit to be broken than her heart at this point.
At the hospital there was no urgency. We waited in admitting for a while, then waited for them to start an IV up on the floor before she could go to the cath lab. While her back pain was getting increasingly worse, since there was a plan in place, no one seemed to think much more of it. I told the love of my mom's life to meet up with his daughter for lunch, because really we just had a bunch of tasks to do and it would be better if people were there after the procedure was done, and I had time now to stay. Because while this stunk to be back, it really wasn't that big of a deal.
So my mom and I hung out in her room. I got mad as the nurse told me they don't draw the labs off the IV starts and proceeded to stick her multiple times. Sometimes it is a blessing to be a nurse, sometimes it is a curse, when you know enough to know things can be better, but also wanting to respect that this is not my specialty and I don't want to upset the people that are caring for my mom.
As we are waiting for our turn in the cath lab, my mom looked at me and asked me if I would pray for her because she was really scared. Red flag. Cardiac patients and fear are usually never a good combo.
How I made it through that prayer is beyond me, because even typing right now I want to ball my eyes out. I will forever cherish that little moment between her and I, where she let her guard down as my mom and let me into a deeper part of her soul. My mom and I have always been close, but fear is not something she expresses on a regular basis. I tried to conceal my new found fear and expressed to the nurse how much pain my mom was having. She put a call out to the NP who said she would be well medicated in the cath lab and to wait. So we did. Not long after that my mom went over to the cath lab, signed her consents and headed on in. My restaurant buzzer and I went to sleep in the waiting room where Judge Judy was screaming too loud at obnoxious people on TV. I wasn't able to sleep and kept debating about calling into work as I had been up for way to long at this point. Eventually I got to the place where I could sacrifice some PTO and decided I would just stay awake right now for my mom and stay home tonight to get some sleep.
When I called into work and explained what happened, I realized how little I was trying to make the situation. I didn't want to admit my fear that we were back here, in this place, with the unknowns again. I wanted to write off the cath lab as a routine procedure, because surely we would go home tomorrow and this wasn't a big deal.
Around 5:15 my buzzer went off. I walked back to the cath lab ready to see my mom, where I instead saw two chairs behind a curtain. My heart sank. The panic and the fear washed over me as the doctor who we jokingly referred to as Dr. "Carefree" came out of the next room. He was frazzled asking for me to sign consents for them to immediately take my mother back for open heart surgery. They were unable to aspirate the fluid off of the heart because she developed a rare phenomenon called "Dresslers Syndrome." And while he and another Dr. tried to aspirate the fluid, she went into cardiac tamponade and dropped her pressures. He said we were lucky that she declared herself here, because she would not be alive if this had happened outside of the hospital.
So I signed my name to the forms and walked next to her as we all quickly got back to the OR. I gave her a kiss at the elevator and told her that I loved her. And she told me she loved me back. I quickly turned around and lost it as I made my way to the waiting room where we had spent too much time in the previous week. I texted my family to make arrangements to come to the hospital now, and I prayed. A lot. I am lucky Jon didn't get a speeding ticket or crash the car. Because apparently, when you text "come now." He takes it very seriously. And honestly, it was that serious, I just didn't want to admit it.
I eventually put the post up on facebook that my mom was in need of prayers, and throughout these last few days I have let the walls fall that I want to put up to keep everyone around me away. I know everyone wants to help, and I know I don't want to walk this journey alone...but I don't know how to let people walk next to me too well either. I don't know how to tell you what I need, because what I want are things you cannot give me, and at this point I am no longer sure what a need is.
Waiting rooms suck. Waiting sucks. Limbo sucks. When the cardiologist walked in after the surgery, we were told she was alive and how serious it was. He did not paint a good picture. The cardiac surgeon came in after him and told us that the goal was to make it through the next 24 hours. Each hour she made it increased her chances of survival. I never thought hours could move so slowly.
As we waited for them to get my mom situated in the CVICU, we all collapsed. Emotionally and physically. I am grateful for the strength God gave me to say a prayer and to hold my sisters as they sobbed in my arms. I am grateful for the people that held me up as I fell apart. I am sure the pain and the fear and the anger will continue to wash over me, and for the first few days I focused as much as I could on the facts and what needed to be done. I wanted to forget that was my mother in that bed. I wanted to just stare at the screen and dissociate from everything and everyone around me. I wanted to either run away or run into that bed and lay next to her. Neither of which were really options.
I will be forever grateful that we made it through that night.
As my mom coded 3 times and was shocked over 20 times throughout the night, I stood in the corner and prayed. I know the research that says some people do better if they see a code to know that everything was done for their family member, where as others it can be traumatic. I'm a watcher. I wanted to make sure things were done, and they were done right. I also wanted to have me feet firmly planted there in case someone needed to jump in to yell stop. My mom and I have similar beliefs about life, and one of them is quality over quantity. So I prayed that if this was supposed to be the end, that God would take her. That the pain would stop, that the chest compressions could cease over her broken sternum. I know she would have no recollection of the event and took great comfort in that. I also took comfort in the fact that so many of my friends down in my unit heard those calls over the loud speaker and could pray on the spot. I wasn't alone. My mom, wasn't alone.
Honestly, I thought my mom was going to die that night. And honestly, it would have been easier if she had. Please don't take that the wrong way. It wouldn't be better, but it would be easier, because the grief process could start and I could start to make some peace. I could take comfort that there would be no more pain or suffering and that the hands of God wrapped around her heart and took her home. I'm sure she will tell you the same thing when she comes around. She knows her ultimate destination, and the road that now lies ahead of her is anything but easy, but I am grateful that God is still in this road with us. I'm grateful that his hands are still around her very weak heart, and I'm grateful for the moments I have had since that time where I could again see my mom inside that broken body.
For some reason, this was not yet her time. God did not intervene, and I did not yell for them to stop. I prayed for God's wisdom and his will, and I sobbed my face off after we had made it for 3 hours without a code and I finally fell asleep for a bit.
On Thursday we all continued to run on no sleep and took turns sitting at my moms bedside. It was this day that they turned the sedation down for the first time and I got to see that even after all those codes, my mom was still inside. Thursday was a long day, and it was starting to dawn on me that this hospital experience will be nothing like the last. We will not be able to leave in a week, if we are able to leave at all. They started to lose the pulses in her right foot and decided to take her back to the cath lab to see if there were any clots as well as to move the balloon pump to the other side. I'm scared that it is my name on all of those consent forms. I'm scared, because when I signed them, I have never been presented with any other option. It is in that moment that the doctors make a game time decision, and I am expected to get on board. There is no guarantee of a good outcome or the road ahead. With every consent I sign, I get more scared that my mom will be alive, but will not be able to live. This is my greatest fear.
After making it through the cath lab I got a phone call Friday night again asking for a consent. This time to start dialysis and place the line for that. I was more than on board with that plan as the swelling everywhere kept my mom from opening her eyes and looked absolutely awful and uncomfortable. By Friday morning, the nurse again called me and said things had kind of taken a turn for the worse. Earlier in the day she was only able to keep her oxygen saturation levels up to the upper 80's. Now they were only up to the low 80's and they could not find a definitive cause. While she might have had a blood clot by her lungs, they could not give her any blood thinners because she had a bleed after the cath lab procedure.
Again a step back, and again my heart sank. So I called extended family and got the word out that people may want to come see her. We spent a lot of time waiting and crying. I felt bad knowing my mom would hate to have people see her like this, but also knowing that people deserve to say "I love you," and "good bye." And since we were still being told that we were critical and no where out of the woods, this turn in the opposite direction seemed like a good time to start that process. That day I settled into my sadness and fear. It sucked. But as I have said before, sometimes you just need to "sit in the shit." There is no way out of through it, until you fully acknowledge it and embrace it. This is just where we are at.
When they turned the sedation down that morning I had a few minutes where there was only my cousin in the room. My mom nodded some appropriate responses to questions people had previously asked, and although I know she won't remember it, I had to tell her that I had her back. She kept pointing to the tube and asking for it to come out. I explained how right now everything was temporary, and that the tube would come out. And I promised that if it wouldn't, I would tell them to turn it off and let her go. I tried to hold back the tears as I promised my mom we would let her go if we were no longer heading in the right direction. I knew my mom was in there as she squeezed my hand and the tears streamed down her face. I'm sure every time she woke up she was afraid that she would be trapped like this forever. Stuck without words and without communication. At the time unable to open her eyes and barely able to lift a hand, and I wanted to make sure she knew she wasn't stuck. I wanted her to know that if there was no hope, we would let her go to her ultimate home.
That was the hardest conversation I have had my entire life, but it was also one of the most meaningful. I got your back mom. Forever.
The pastor that married us, and who is also my friend's dad offered to come pray with my mom and with us. So that afternoon I asked the nurse if we could turn down the sedation when he was there so that she could hear the prayer. We got permission to have more than two people at the bedside, and I held my family close and my mom's hand tight, as we prayed a big prayer. I am grateful that he prayed not only for survival but for her soul. For God's healing, and peace, and comfort. Because in these moments, that feels even more important to me than her temporary body.
Jon and I escaped the hospital for a little while and when we returned we found out that they had turned my mom to change the bed after out prayer, and when they did, she was able to put a lot of fluid out of her chest tube and her numbers drastically shifted. He blood pressure increased on its own some, and her pulse ox moved the upper 90's. God is good. Oxygen to other vital organs is good. And it felt good that all the nurses talked about how this all happened right after our prayer. I am grateful that God made his presence and his plan known. I needed that. I needed some hope. I needed something to celebrate.
Since Friday night my mom had continued to improve. She remained more aware and awake even through the sedation. She was able to give up some of the blood pressure meds, and we were able to hold on to a slightly thicker thread. It started to feel like we were living in half day increments instead of hour increments. Jon and I headed up to the hospital last night to be able for me to have some time alone with my mom. I'm not so good at waiting in a waiting room, but I can sit by that bed all night long. Not long after we got there we got the results that showed she was getting no blood flow to her right foot and a large portion of her leg. So I again signed my name to the form and she went back to the cath lab to see if they could save her leg. I know that big picture, her life is the ultimate goal, but I want my whole mom back. I want my active mother back. I want my mom to be able to walk into my house, and while we will cope with and embrace a new normal if we have to, I do not want to.
So this is where we sit. Her kidneys have started to turn back on, and I have never been so excited for pee in my life. Her oxygen levels are good and we are hoping we can remove the breathing tube in the next 24 hours. We are still working on our goal to make it through the weekend. Her leg is slightly better, but she needs to start having pain for us to know if it is coming back. They are still having trouble keeping pulses in her feet, and we should know more in the next 24 hours on if her leg will make it.
I am so thankful for all God has done to this point. But I need so much more. I need more hope, I need more faith, and I need more of his strength. I need wisdom for how to continue to invest in my marriage over the coming months that will be difficult and trying. I need to know how to take care of my pregnant self and my unborn baby. I need to know when to just sit with my mom and let her cry and when to push her. I need to know God is here, and that he is still good. I need this roller coaster ride to be over, or at least to be able to take a break before I vomit on everyone. So will you please pray for that and will you please pray for my mom's leg and foot. God is big enough and his will is good.
Thanks for listening to my story. Thank you to my coworkers who have given me a place to shower, sleep, and cry. Thank you for the offers of food and help, even if I have not yet been able to take you up on it or return your message. Thank you for just showing up, even when I didn't ask. Thank you for calling to check in on me, even if I ignored your call. Thank you.
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