I smiled my ass of on Sunday; despite all of the medical drama going on with our family, I painted my face all up and trekked to the city- sans-MiniLatte to enjoy dinner and a concert with my hubby. It was a blast, and I feel guilty as shit. I know I shouldn't, however, according to my therapist, it's a very common emotional response to an experience such as mine. It's called survivor's guilt and is actually a form of PTSD. Even though there wasn't a shared event between us that landed my mom in the hospital and not me, this extended hospitalization is a traumatic event that is dramatically shaping our lives and I have to cope with the fall out and the emotions that go with this. Trust me, I've been doing my share of bargaining to wish my mom healthy again.
Back in February, with just a little under a week to go until Mom came for her visit; I had one of those red-letter days- work was fantastic; the weather was summer-like and I came home to two e-mails; one congratulating me for getting picked for a Meet & Greet with Blake Shelton at his upcoming concert, and the other with pre-sale tickets for one of my favorite bands- Train- for their San Francisco tour. I was beyond excited. I frantically called my mom until she picked up the phone because I was so excited to share all of the good news. Not that any of it benefited her, but because she is always so supportive of me. As usual our phone conversation was uplifting and filled with laughter- we could do that, make each other laugh over nearly anything, our sense of humor are very similar (is that genetic??!!).
There have been so many celebratory events since she went in the hospital- St. Patrick's Day, our ten year anniversary; her 62nd birthday, Easter that have been low key and glazed over. All-out celebrating just doesn't feel right, nor do I have the energy. We've also managed to go to two concerts and a basketball game during this time. The outings are much needed distractions and although fun, I spent most of the time feeling guilty for attempting to have a good time while my incredible mother is bed-ridden, a prisoner in her own body..... I'm somewhat rational and realize that my presence either in the hospital or elsewhere isn't going to change the outcome of her prognosis for that day. It just doesn't feel right to be having a good time either; it also doesn't feel right to wallow in negative emotions. There isn't a happy medium right now- if there was, I'd give anything to find it- I'd give so much more to wave a magic wand and make her instantly better.
I also know that if she could talk, my mom would tell me to laugh, smile and play. She wouldn't want me to be missing out on living and in fact is probably feeling like shit herself for thinking that I'm sacrificing for her. I am, but that is just something that you do for someone that you love so very much. I know that if this situation instead was myself and MiniLatte, I would tell her to go, live, laugh, play.
I also have a hard time with the conversations with her- I used to talk to her when I was stressed before and she would tell me that she wished she could be right there with me. Well, now she is, but she isn't. Is she thinking that, and it's having a detrimental effect on her emotional well-being? I tell her a story and she cries. She can't tell me why- it breaks my heart. I can't even really talk about the weather.... It's exhausting. What should I do......
This Mommy Runs on Caffeine
April 17, 2012
April 14, 2012
Day 38: Jinxed
We have a running joke around our house to not bring attention to the fact that things are going well.... like, "I haven't gotten sick all year...." "I haven't missed one green light yet," the instant you say it, it happens. The next day you awake with a scratch throat, or you hit the next 10 signals red, red,red. Jinx.
I jinxed it- the earlier post about mom doing so well completely went sideways. I recived a call this morning around 8:30- when the 231 prefix comes up it always makes my stomach drop.... and sure enough..... Mom became unresponsive this morning and they called a Code Blue to revive her. (I hear these every day at the hospital--- it makes me sad especially when the next intercom page is followed by one for a chaplain.) She recived CPR and needed to intubate her yet again- if you're counttingg, this time makes four.
Back to square one: arterial line; feeding tube; monitors; back in the Cardiac ICU. The diagnosis from today is that she aspirated on her own saliva and began choking; with her already in a precarious condition with her lungs,this caused her to stop breathing and then her heart stopped beating. Fortunatley she didn't have to be shocked..... if there is anything fortunate in this situation.
Her lungs are in really bad shape- from the COPD and pulmonary edema. For this reason alone, she may not be a candidate for heart surgery, ever. But they said we'll have to wait out the next 24 to 72 hours. That must be the standard response as I am having a vivid flashback to March 8th when I first heard that her condition was grave. She pulled through that time- I hope that her has the fortitude and heart to do it once again..... and that I can stand by patiently watching. This is so. flipping. hard. I'm surrounded by a team of very supportive people to help me through this and the only person that I want to go running to right now is my Mom..... so ironic. I can hear her telling me, "Oh babe, I'm so sorry that you are going through this." She wasn't really one to offer unsolicited advice but she sure is a great listener. Amazingly so. She's always been that way. And offers up a funny one liner in that charming sense of humor of hers to make you laugh and temporarily forget about your troubles.
I wish that I could remember more now to get me through
I am so, so glad that we took MiniLatte to see her on Thursday. She looked amazing and un-alarming so MiniLatte was happy to see her Grandma and vice versa. A bright spot Im sure. My intentions are also to reminder her what she has to fight for-- to see this wonderful little girl grow up. She will get to see that. She has to, I can't imagine my life without my Mom.
The next few days are going to have some sleepless nights attached to them and I know that the walk from the parking garage is going to be tortuorously long enough for that enormous lump to appear in my stomach as I fear what I'm going to walk into......
Day 37
A glimpse of 'before' Mom today. Before the heart 'incident' that has so turned my world upside down. She was sitting up in a chair when I walked into the room this afternoon and gave me a big smile when she saw the vase of one dozen pink roses that I brought for her; she can have flowers now that she has been transferred to a Progressive Care Unit instead of the ICU. "Oh, babe, they're beautiful...." she whispers and then her head drops down to her chest. Speaking four words takes an unimaginable amount of energy for someone who's been hospitalized for so long.
Forming each word, let alone a sentence is something that you or I may take for granted; even the simple act of sitting upright in a chair or brushing your teeth may seem so mundane. For Mom, they're tasks that must be thought out and deplete all of the energy from an already-taxed body. She has not suffered any neurological damage during her hospitalization, however the large amounts of sedation has made talking quite the chore. Walking is another story- she has lost most of her muscle tone and cannot support herself in an upright position sitting. Yes, she was sitting in a chair today, however she was secured to the chair with a Posey belt with an attendant not too far away. The 90-minutes of sitting left her spent- which is actually a good thing as she might get some much needed rest and will not suffer from anxiety the rest of the day.
We found out yesterday that she is weeks away from the heart surgery that she needs to replace the valves. She won't survive it in her current condition- it is a surgery that a somewhat healthy person will have problems recovering from so that option is completely off of the table. The surgeons are going to reevaluate her each week; the nurses and support team will be providing her with aggressive therapy to help get her on the road to recovery much faster. "If it were my mom, I wouldn't do it," states the surgeon. I understand that and appreciate that- I just wanted the doctors to be straight with me. Her primary pulmonologist and cardiologist weren't telling me part of the story- for each internal organ that is not working correctly, it lessens recovery by 25%. With low functioning lungs, hear and liver, there's only a 25% chance of recovery at this point- wait it out and odds will improve.
Fine, we'll wait this out day by day. In the meantime, try to provide her with the moral and emotional support that she needs to cope with her new 'living arrangements' (at least it's a private room!) and be her advocate. I'm so thankful that an acquaintance is actually an RN in that unit and has called dibs on my Mom whenever she is on shift. She's a great nurse and takes extra special care of mom and goes the extra mile for us. Another little blessing in this adventure- I'll take each one that we find! Especially because things are so difficult.... trying to return to some sense of normal at home outside of the hospital. We'll see- it will have to be after my own surgery (yeah, really- I have to have my gall bladder removed- nice timing, eh?) next week. Oh, and I almost forgot to mention this is on top of the news that a very close family member has been diagnosed with lung cancer (nameless right now as most of the family doesn't yet know); and my 93 year-old paternal grandfather is currently in hospice care with bladder cancer. This year has been a dozy--- that's why we are just surviving life one day at a time right now. We're not the first, nor will be the last, family to overcome adversity but sometimes it's a lonely journey......
Forming each word, let alone a sentence is something that you or I may take for granted; even the simple act of sitting upright in a chair or brushing your teeth may seem so mundane. For Mom, they're tasks that must be thought out and deplete all of the energy from an already-taxed body. She has not suffered any neurological damage during her hospitalization, however the large amounts of sedation has made talking quite the chore. Walking is another story- she has lost most of her muscle tone and cannot support herself in an upright position sitting. Yes, she was sitting in a chair today, however she was secured to the chair with a Posey belt with an attendant not too far away. The 90-minutes of sitting left her spent- which is actually a good thing as she might get some much needed rest and will not suffer from anxiety the rest of the day.
We found out yesterday that she is weeks away from the heart surgery that she needs to replace the valves. She won't survive it in her current condition- it is a surgery that a somewhat healthy person will have problems recovering from so that option is completely off of the table. The surgeons are going to reevaluate her each week; the nurses and support team will be providing her with aggressive therapy to help get her on the road to recovery much faster. "If it were my mom, I wouldn't do it," states the surgeon. I understand that and appreciate that- I just wanted the doctors to be straight with me. Her primary pulmonologist and cardiologist weren't telling me part of the story- for each internal organ that is not working correctly, it lessens recovery by 25%. With low functioning lungs, hear and liver, there's only a 25% chance of recovery at this point- wait it out and odds will improve.
Fine, we'll wait this out day by day. In the meantime, try to provide her with the moral and emotional support that she needs to cope with her new 'living arrangements' (at least it's a private room!) and be her advocate. I'm so thankful that an acquaintance is actually an RN in that unit and has called dibs on my Mom whenever she is on shift. She's a great nurse and takes extra special care of mom and goes the extra mile for us. Another little blessing in this adventure- I'll take each one that we find! Especially because things are so difficult.... trying to return to some sense of normal at home outside of the hospital. We'll see- it will have to be after my own surgery (yeah, really- I have to have my gall bladder removed- nice timing, eh?) next week. Oh, and I almost forgot to mention this is on top of the news that a very close family member has been diagnosed with lung cancer (nameless right now as most of the family doesn't yet know); and my 93 year-old paternal grandfather is currently in hospice care with bladder cancer. This year has been a dozy--- that's why we are just surviving life one day at a time right now. We're not the first, nor will be the last, family to overcome adversity but sometimes it's a lonely journey......
March 31, 2012
Day 24
It’s been 24 days. A very, very long month. I’m still having
the hardest time processing that my Mom is in the hospital- and then it hits
me. I’m driving to pick up my daughter and tell the hands-free to “Call Mom,”
and then hit the cancel button on the steering wheel just as quickly. It’s
habit; I ALWAYS call my mom on my way home so we can share a few laughs,
especially if they are over something silly that MiniLatte did last night; or
vent about something going on elsewhere in my life. She can’t answer right now,
she’s laying in an uncomfortable hospital bed in the ICU surrounded by wires,
tubes and cords; a ventilator is helping her breathe; between three to six
drugs are stabilizing her heart rate, blood pressure, pain, etc. The staff at
the hospital really is amazing- they are doing everything within their power to
provide support and comfort until surgery. And I mean everything- she is
helpless. But I’m tired of seeing them almost more than I see my husband and
daughter.
Her heart is in really rough shape and isn’t going to get any better without open heart surgery to replace at least one valve. Unfortunately because she keeps running a fever; some days high, some days; low grade, the surgeons won’t even touch her. She has to be fever-free for a minimum of five consecutive days. Five very long days. Days in which other complications could crop up- pneumonia, MRSA, another infection and prolong yet again the procedure that she needs to recover. It’s driving me nuts. However, this week my condition has been upgraded from survival-mode- just doing whatever the bare minimum is to get through the day- to functioning.
I put on make-up again on Wednesday; even cooked dinner and worked a few days this week (I’ve been off of work since she was admitted to the ICU). I’ve not been much of a partner to my husband; he’s holding it together for me but it’s starting to take a toll on him as well. I have tried to focus some energy into being a Mom- my daughter adds pure joy to the end of a long and draining day. When I’m spent, she throws her little arms around my legs and says, “I miss you Mommy. You not sad anymore.” It breaks my heart with both happiness and sadness. I’m trying not to let my sorrow and stress affect her. She knows that Mommy’s Mommy is sick and in the hospital trying to get better but wants to kiss her boo boo. I tell her that I am sad because of that but she makes me happy. She’s wise beyond her 32 short months and has more empathy than I can believe.
My step-dad today told me that he was worried about me. I am too. I worry that I won’t have the strength to get through another day of waiting. I want to take care of myself- my appetite has resumed within the past week- that might be curbed by the Zoloft though- it makes me nauseous. Yep, Zoloft. I’m seeking a little help from my prescription-strength friends; Atavan, Zoloft and Trazodone. They were probably necessary before this extraordinarily stressful event, but even more so now that my anxiety and insomnia are through the roof. Are they working? Well, I’m resting a bit better. I haven’t had an anxiety attack in about a week; not sure if it’s because Mom is stable, or I am. The Trazodone makes me sleepy, but I still wake up at 4 a.m.. (BTW, have you ever read the entire warning label on a prescription? I think my before symptoms might have been more manageable than the side effects- crazy!) Sometimes in the morning, I remember the dreams I’m having about her; they’re realistic and make me sad. And then my sweet little girl rolls over and says, “Hi Mama,” and I feel a little better but I hope she won’t have to go through this some day.
Her heart is in really rough shape and isn’t going to get any better without open heart surgery to replace at least one valve. Unfortunately because she keeps running a fever; some days high, some days; low grade, the surgeons won’t even touch her. She has to be fever-free for a minimum of five consecutive days. Five very long days. Days in which other complications could crop up- pneumonia, MRSA, another infection and prolong yet again the procedure that she needs to recover. It’s driving me nuts. However, this week my condition has been upgraded from survival-mode- just doing whatever the bare minimum is to get through the day- to functioning.
I put on make-up again on Wednesday; even cooked dinner and worked a few days this week (I’ve been off of work since she was admitted to the ICU). I’ve not been much of a partner to my husband; he’s holding it together for me but it’s starting to take a toll on him as well. I have tried to focus some energy into being a Mom- my daughter adds pure joy to the end of a long and draining day. When I’m spent, she throws her little arms around my legs and says, “I miss you Mommy. You not sad anymore.” It breaks my heart with both happiness and sadness. I’m trying not to let my sorrow and stress affect her. She knows that Mommy’s Mommy is sick and in the hospital trying to get better but wants to kiss her boo boo. I tell her that I am sad because of that but she makes me happy. She’s wise beyond her 32 short months and has more empathy than I can believe.
My step-dad today told me that he was worried about me. I am too. I worry that I won’t have the strength to get through another day of waiting. I want to take care of myself- my appetite has resumed within the past week- that might be curbed by the Zoloft though- it makes me nauseous. Yep, Zoloft. I’m seeking a little help from my prescription-strength friends; Atavan, Zoloft and Trazodone. They were probably necessary before this extraordinarily stressful event, but even more so now that my anxiety and insomnia are through the roof. Are they working? Well, I’m resting a bit better. I haven’t had an anxiety attack in about a week; not sure if it’s because Mom is stable, or I am. The Trazodone makes me sleepy, but I still wake up at 4 a.m.. (BTW, have you ever read the entire warning label on a prescription? I think my before symptoms might have been more manageable than the side effects- crazy!) Sometimes in the morning, I remember the dreams I’m having about her; they’re realistic and make me sad. And then my sweet little girl rolls over and says, “Hi Mama,” and I feel a little better but I hope she won’t have to go through this some day.
March 27, 2012
A Really Bad Dream
My Mom almost died two weeks ago. Seriously. And I've been living one of my worst nightmares since. A roller coaster ride that I'm happy to disembark from any day now....
My mom came up to visit to help take care of my MiniLatte while her other Grandma goes on vacation. We had planned on her 'babysitting' for three of the five weekdays, being off on the Monday so she could recoup from the drive- trust me, it's a drive, and I knew Mini would put her through the ringer- in a good way of course. They had a fabulous time together, but Mom was exhausted; okay, so, I get that--- LOL. Mom just wasn't quite herself. By Friday, she thought that the 'bug' that she was fighting had finally got the best of her and she was down for the count for four days. (Although, we did manage to fit a mani/pedi into the weekend) By Monday, I was really worried that this wasn't the average bug and told her that she was going to the clinic- even if it was kicking and screaming- tomorrow. And the clinic is where this horribly stressful past few weeks started to go downhill.....
The cute little nurse took her history, listened to her lungs, etc and called in the doctor.... the doctor listens to her chest for two seconds and orders an EKG; once he read the results, he quickly moved us into the trauma room and called 911 to get her to the ER. Whaaaaat??? We just stared at each other trying to process what was going on; each one of us putting up a brave front.
She was loaded up into the ambulance to a local ER (I being local, went to the wrong one) and was eventually diagnosed with something called A-fib. Her resting heart rate was 177 BPM (normal range for her age is 90-123) in addition to a really high blood pressure. The hospital was having a difficult time trying to stabilize her so they admitted her for observation.
The next day, Wednesday, we went to visit her in the hospital and she was stable yet uncomfortable and begging to go home. Some time during the middle of the night she became very agitated, her blood pressure dropped, heart rate went right back up, so they gave her a CT scan for a further work-up. The contrast dye caused her system to crash; her kidneys, liver and spleen all lost function; additionally tests determined that her mitral valve and tricuspud valve were in need of repair. By Friday afternoon, she was on life support in the Cardiac ICU and her condition was incredibly grave. The cardiologist told us that the next 48 hours were going to be tough.
I was shocked and devastated; what the hell was happening? This was so sudden. It broke my heart to realize that I might lose my mom; it also pissed me off to no end because I thought the valve issue was something that might have been detected earlier if she would have had health insurance. I've not had the misfortune of losing someone close to me in my adult life and I wasn't prepared for that journey. I cannot even put into words my emotions. I don't think I've ever cried so hard or so long in my entire life. Or prayed and hoped so hard or long either.
Answering our prayers, on Sunday her kidneys were beginning to function again therefore narrowly avoiding dialysis. Liver and spleen started to function as well. Her body was healing well and by Tuesday (a week since arriving at the hospital), her breathing and feeding tubes were out and Mom was making us so proud and happy. And then she developed pneumonia.
By Saturday, she was intubated again due to the pneumonia; pulmonary edema and some recurrence of the A-fib. That was actually a blessing as they were able to finally perform a cardiac catheterization to see how badly her heart was damaged; we had to wait for her kidneys to function fully for the test to ensure she would crash again. The good news is that the cardiologists determined that she wouldn't need any bypass surgery, just the aforementioned valve replacement/ repair.
On Monday, she had developed a severe blood infection and her condition was once again critical. On Thursday, we received word that tests came back positive for H1N1. She did have a 'bug' after all, which might have been what triggered the A-fib. She also received a dose of a very powerful antibiotic called Vancomycin which caused an allergic reaction resulting in a head to toe rash. She was intubated for the third time this past Saturday; the bad valve is causing pulmonary edema. The only thing that will help this is to have open heart surgery.
As if that isn't some scary shit right there. I can't even imagine how she is feeling about that. I'm petrified; but I have faith that she will feel like a new woman when she recovers, whenever that may be. Today was the first day that I didn't leave the hospital with a huge knot in my stomach wondering what the night would hold for her. Tomorrow marks three weeks that she has been in the hospital; I've been at her bedside every day to will her to get better; to watch over her. My wonderful husband has been my rock; comforting me and drying my tears and picking up the slack around the house and with MiniLatte. So has my Dad, Step-mom and in-laws. So many wonderful people have offered help, but I'm not sure what help to take them up on. We missed our wedding anniversary; we'll celebrate when we feel that there is much more to toast- I'm looking forward to celebrating with both her and my love; Mom was my Maid of Honor on that day 10 years ago.
My mom came up to visit to help take care of my MiniLatte while her other Grandma goes on vacation. We had planned on her 'babysitting' for three of the five weekdays, being off on the Monday so she could recoup from the drive- trust me, it's a drive, and I knew Mini would put her through the ringer- in a good way of course. They had a fabulous time together, but Mom was exhausted; okay, so, I get that--- LOL. Mom just wasn't quite herself. By Friday, she thought that the 'bug' that she was fighting had finally got the best of her and she was down for the count for four days. (Although, we did manage to fit a mani/pedi into the weekend) By Monday, I was really worried that this wasn't the average bug and told her that she was going to the clinic- even if it was kicking and screaming- tomorrow. And the clinic is where this horribly stressful past few weeks started to go downhill.....
The cute little nurse took her history, listened to her lungs, etc and called in the doctor.... the doctor listens to her chest for two seconds and orders an EKG; once he read the results, he quickly moved us into the trauma room and called 911 to get her to the ER. Whaaaaat??? We just stared at each other trying to process what was going on; each one of us putting up a brave front.
She was loaded up into the ambulance to a local ER (I being local, went to the wrong one) and was eventually diagnosed with something called A-fib. Her resting heart rate was 177 BPM (normal range for her age is 90-123) in addition to a really high blood pressure. The hospital was having a difficult time trying to stabilize her so they admitted her for observation.
The next day, Wednesday, we went to visit her in the hospital and she was stable yet uncomfortable and begging to go home. Some time during the middle of the night she became very agitated, her blood pressure dropped, heart rate went right back up, so they gave her a CT scan for a further work-up. The contrast dye caused her system to crash; her kidneys, liver and spleen all lost function; additionally tests determined that her mitral valve and tricuspud valve were in need of repair. By Friday afternoon, she was on life support in the Cardiac ICU and her condition was incredibly grave. The cardiologist told us that the next 48 hours were going to be tough.
I was shocked and devastated; what the hell was happening? This was so sudden. It broke my heart to realize that I might lose my mom; it also pissed me off to no end because I thought the valve issue was something that might have been detected earlier if she would have had health insurance. I've not had the misfortune of losing someone close to me in my adult life and I wasn't prepared for that journey. I cannot even put into words my emotions. I don't think I've ever cried so hard or so long in my entire life. Or prayed and hoped so hard or long either.
Answering our prayers, on Sunday her kidneys were beginning to function again therefore narrowly avoiding dialysis. Liver and spleen started to function as well. Her body was healing well and by Tuesday (a week since arriving at the hospital), her breathing and feeding tubes were out and Mom was making us so proud and happy. And then she developed pneumonia.
By Saturday, she was intubated again due to the pneumonia; pulmonary edema and some recurrence of the A-fib. That was actually a blessing as they were able to finally perform a cardiac catheterization to see how badly her heart was damaged; we had to wait for her kidneys to function fully for the test to ensure she would crash again. The good news is that the cardiologists determined that she wouldn't need any bypass surgery, just the aforementioned valve replacement/ repair.
On Monday, she had developed a severe blood infection and her condition was once again critical. On Thursday, we received word that tests came back positive for H1N1. She did have a 'bug' after all, which might have been what triggered the A-fib. She also received a dose of a very powerful antibiotic called Vancomycin which caused an allergic reaction resulting in a head to toe rash. She was intubated for the third time this past Saturday; the bad valve is causing pulmonary edema. The only thing that will help this is to have open heart surgery.
As if that isn't some scary shit right there. I can't even imagine how she is feeling about that. I'm petrified; but I have faith that she will feel like a new woman when she recovers, whenever that may be. Today was the first day that I didn't leave the hospital with a huge knot in my stomach wondering what the night would hold for her. Tomorrow marks three weeks that she has been in the hospital; I've been at her bedside every day to will her to get better; to watch over her. My wonderful husband has been my rock; comforting me and drying my tears and picking up the slack around the house and with MiniLatte. So has my Dad, Step-mom and in-laws. So many wonderful people have offered help, but I'm not sure what help to take them up on. We missed our wedding anniversary; we'll celebrate when we feel that there is much more to toast- I'm looking forward to celebrating with both her and my love; Mom was my Maid of Honor on that day 10 years ago.
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