Hours later and I'm still in the ER. My blood pressure continued to register critically low as the monitors persisted in their relentless alarm alerts. And my heart was still racing as if I was running a marathon.
As the minutes slowly ticked away, I went in and out of consciousness, taking short naps as I continued to wait. Minutes turned into hours and finally almost 6 hours later, the nurse starts prepping me for my move upstairs. She unhooks me from the wall monitors and then reconnects me to a portable monitor that gets placed at the foot of my bed.
"It's protocol for heart patients" she says.I guess she saw the quizzical look on my face when I was staring at the "box" monitor that I learned later had to go with me everywhere I went.
Heart Patient.Those two little words now defined me inside the walls of this hospital. And I couldn't help but wonder if those two little words will continue to define me outside of here...outside there...where my life awaited me.
We took the elevator upstairs, two nurses accompanying me to my new floor and room where I will be staying.
"For how long?",I ask the doctor.
And just as I was getting a little comfortable and accepted my situation, the doctor's answer was
"Indefinitely until they figure out what's going on with your heart."Indefinitely? Not one day or three days or even four...but indefinitely? Not what I wanted to hear, because indefinitely is not something I can work with. What can I do with indefinitely? Unacceptable, because I cannot feed nor take care of my kids with "indefinitely".
For the first time since that horrible day started, I began to feel something other than sadness and worry. I started to feel angry, completely and irrevocably ANGRY and FURIOUS at the world. ANGRY and FURIOUS at the doctors...what in the hell do they mean indefinitely? How do I work with that? Someone needed to hurry up and get their tests going because I cannot tell my young kids,
"Oh you're hungry? Ok just wait INDEFINITELY and then I'll make food for you."
"Oh you're done with school/daycare? Ok just wait there INDEFINITELY until I get home."
"Oh you're hurt? Well hang in there INDEFINITELY and I will help you, ok?"NO! NOT OK! NOT OK!!!
I eat good, take great care of my body and health. Heck, I eat oatmeal every morning of every day! I eat huge bowls of greens, equivalent to 4 regular sized salads, once or twice a day, every day! I stay away from sweets, artificial and processed foods, and dairy. I drink gallons of water, and even go as far as being strictly paleo, eating mostly lean meats, fruits, vegetables, and superfood grains. I eat quinoa instead of rice, put chia seeds in almost everything I drink, squeeze lemon juice in my morning water, take Vitamin E, Vitamin C, and fish oil everyday, and even found a bag of hemp seed at Costco that I religiously put on my oatmeal or sometimes just drink straight up in water with a little honey.
Over the course of 3 years, I developed a lifestyle where I kept my body and health in tip top shape. And now I have a heart condition? Ok, I think I've had enough of this. I want to go home to my babies. I WILL rip out all of these wires and needles and walk myself out the same way I walked in. That's how I feel about your "indefinitely".
I needed to talk to my husband, if only to hear his voice. I needed him to calm me down, needed him to hug me and to hold me. But I can't call him. And I most certainly can't have him here. He's with the kids, busy, with his hands full. I can't bother him right now while he's trying to get everything done and the kids to bed.
But seriously, who would stop me if I just upped and walked out of here? No one actually. Why do I need to stay here when they don't even know what's wrong with me? I can lay in bed and watch TV just fine at home thank you very much. I do not need to be half naked in this ugly hospital gown, in this sick smelling room, and expose my body to someone every half hour. I don't have to do this. Right? And then I remember, "YOU CAN DIE". SIGH.
So I shut up, sucked it up, and waited.
All the while, the receiving nurses continue to go through their admission routine and for the millionth time, I hear,
"You are the youngest heart patient we've ever had."
"You have how many kids..4??? Wow, this must be so hard for you."While they continue to work, going through my chart and running through the set of tests that will be happening the next day, all I could think about was
- I didn't shave my legs, going on 2 weeks now, so good luck to whoever's eyes has to behold that mess
- Good thing I brought my laptop with me, I can probably get some work done tomorrow and
- I miss my babies. Terribly.
It's almost 9pm which means Mason should be asleep by now and hopefully stays down the rest of the night for his Dad's sake. Mitchell and Matheus should be in bed already; it's a school night so they should be snoozing away.
And Zaley girl...well she's still up. I just know it. She's a night owl, very much like her Dad. And she is most likely playing one of her games or watching "Max and Ruby" on her iPad. I hope bath time went well, and that babe didn't have too much trouble tonight.
I really do hope Mason is not looking for me. My other kids are old enough (10, 8, and 4) that my absence for a few nights won't hurt them too much. But Mason, he's only 9 months and this will be his first night without me. My first night without him :-(. Please God comfort my son and have him forget me, just until I get home.
With nothing much else I could do, after arguing the situation with myself from a million different angles and losing the argument every single time, I finally decide to settle in. YOU WILL DIE, kept reverberating in my head. So I reached for the TV remote control and flipped through the channels until I came to "Law and Order: SVU". And just as I hoped, a marathon was on :-). I could always count on basic cable to have copious amounts of Law and Order reruns.
Then my nurse walks in with a cold sandwich and a bag of chips. Dinner AND a movie?! Well it just might be my night after all. Not sure if that was sarcastic or not. I was too tired to know, or even care.
I ate my dinner, hating the taste and feel of the sandwich in my mouth, but ate it anyway to relieve the pangs of hunger. I washed it all down with ice cold water, settled into my blanket for my first night in the hospital, and fell asleep to the sounds of Olivia nabbing yet another pedophile.
When I wished for a vacation, for some time off from work, this was not what I had in mind. I had to chuckle to myself at that thought. If this is my wish come true, well it is quite a vacation so far. But come on now, let's be real. Like I was really going to take time off from work, use my PTO for myself. Yeah right. If I'm not pregnant and nearing labor and delivery, or my kids are not sick and need me at home, then the PTO gets saved for emergencies. That's how it is with having kids. You never know when you will have to drop everything and just revolve your world around them. So about that vacation? Yeah, I had a better chance at winning the lottery.
But even though I was seriously neglecting myself, God never stopped looking out for me. He came through for me, as he does everyday. And he saw what I was stubbornly refusing to see myself. He saw that I desperately needed a break. And He knew that the only way to get me to "rest" was to literally knock me totally off my feet, complete with a hospital gown, wires keeping me hooked up to this bed, in this room, in the hospital, with no choice but to kick my feet up and watch Detectives Olivia Benson and Elliot Stabler kick some serious criminal butts.
And He was right. His plan is always on time. And His plan is always greater than ours. And if my heart damage really was a result of all that I do for my kids and family, then I am proud to have damaged it loving them with all of me.
So in the hospital, on the 4th floor, in Room 426 I stayed for an entire week, working from my bed, while doctors ran their tests and nurses rotated in and out. I got to know so many nurses and aides as they kept seeing me every time they came back on shift. I was pretty much a resident.
I went through a series of procedures, under the watch of my huge team of doctors: 2 cardiologists, 3 hospitalists, 2 infectious disease doctors, a cardiothoracic physician assistant, and a cardiothoracic surgeon. The battery of tests and procedures included:
- Transthoracic Echo-cardiogram (TTE) - that fancy test I mentioned earlier where I have to swallow a camera under anesthesia. I thought it was so cool that the anesthesiologist used propofol, what they now know in the industry as the "Michael Jackson drug". Boy was that some "good" stuff hehe. I see you MJ ;-)
- Echo-cardiogram - I had to lay very still in bed for over an hour, like I literally could not move, while a technician probed and poked at my chest and ribs to get pictures of my heart, telling me every 2 minutes "Don't move".
- Dental exam - apparently your teeth had to be in "good" condition before they can clear you for surgery and surprisingly, my teeth passed. If you grew up in Samoa like I did, dental health is nonexistent. We only go to the dentist after we have suffered the pain of toothaches for about a week and suffered your Dad trying to pull out your tooth with his bare hands or pliers. Whichever was more convenient. LOL.
- Neck ultrasound - to find out if my blood vessels were compromised; helps the surgeons road map their surgery
- Aggressive antibiotic therapy - the infectious disease doctors thought that I had endocarditis (infection of the heart) due to an infection that I might have contracted somewhere somehow. Did you touch goats? Did you eat unpasteurized cheese? Do you do recreational drugs? Did you travel to Africa? Did you drink unsanitary water? Did you eat raw pork? My favorite one was the goat question, but as much as I wanted to pull their legs and say yes to the goats, my answers were all "No", which left them even more stumped. So while they cultured my blood to find out what could have caused this supposed infection, I was on 3 different antibiotics that completely wiped out my blood vessels. You could count about 30 different IV pricks up and down both of my arms.
- Thyroid therapy - doctors found that I had hyperthyroidism, something they think I have had my whole life and didn't know about, so I was put on aggressive thryoid medication to bring my thyroid levels under control
- Round the clock blood work - to monitor my troponin levels, and everything else under the sun
- Surgery prep - nasal swabbing, whole body shaving, and 2 pre-surgery showers with that icky soap
So after 3 days of testing, all the while looking and feeling like the most normal patient on my floor, working from my hospital room, and writing papers for my classes, my team of doctors were finally equipped with their diagnoses, and ready to execute their plan of attack.
Diagnosis: Aortic stenosis and aortic regurgitation, with a possible hole in my septal wall, that will require open heart surgery. Secondary to this, I also had a large mass around my thymus that could be cancerous.
Translation: my aortic valve, the valve that controls the flow of blood away from the heart, was severely damaged, interfering with the flow of blood to the rest of my body. Blood was leaking back into my heart, making the heart work harder to pump blood. If left in this current state, the mild heart failure that I was experiencing will develop into more severe heart failure, causing death.
So the solution is this: the surgeon will open up my chest by sawing through my breastbone, and then cracking my chest open by pulling my rib cage apart. While they are in there, they will remove the mass around my thymus, possibly removing the entire thymus if needed. The aorta will be sliced through, the old valve removed and then replaced with a new mechanical valve. The surgeon will also go in between the heart valves and sew up the hole that might be in the heart wall. All of this will be performed while I am completely under anesthesia, on heart and lung bypass machines that will pump my blood and breathe for me until the 4 hour surgery is complete.
All that was left at that point was a date and time. The operating rooms and all of the cardiothoracic surgeons were booked so they had to try and squeeze me in somewhere. And as you can imagine, the next couple of days waiting were super charged with anxiety and apprehension, and every feeling in between.
My family came to visit me every night, so I always looked forward to my evenings. My husband who couldn't bear leaving me alone at the hospital, took off work for a couple of days to stay with me during the day. At about 3:30pm he would make the trek home to pick up the kids from school and daycare, take them home to shower, and then bring them all back to the hospital to eat dinner with me. This was a lot of work, but my husband did it without complaint.
And it was always so very hard to say goodnight to my babies at the end of the night, but we kept such a good act on that they never knew how serious all of this was. They were happy and that is how we wanted to keep it. And my Mason, who turned 10 months and took his first steps while I was in the hospital, never cried for me, not even when it was time to go home. Not once. I tell you, that was all God's doing. He held my son for me every night because I couldn't do it myself. And Mason was doing just fine without me :-). Why wouldn't he when he had God as my replacement? :-)
My older boys were holding up ok. I could see that they knew something more serious was going on and that we weren't telling them everything. But they also knew we were doing it to stay strong for them. So they kept it to themselves. And put on the same act that we had going on. My brave, considerate boys. They really stepped up and I am so proud to be their mom.
My Zaley girl was oblivious to everything. She saw it as an adventure, of going to Mom's hospital room at night and hanging out. And that I was in the hospital because the doctors needed to take care of me. She was even happier because she got to spend time with her aunties and uncles at the hospital, who also came every night to visit. So as much as it hurt to be away from my kids, I was encouraged and strengthened by their happiness.
The long awaited news came to me on Saturday, September 26, 2015 while I was waiting for my family to visit. It was the weekend so that meant I was going to spend the whole day with the kids! My surgeon walked in while I was eating breakfast and by the look on his face I immediately knew that he had set the date. I silently wished that he could wait just a little while longer, just until I had my husband next to me. But he was in a rush and had to get ready for surgery that morning.
So I faced the news on my own.
"Surgery is set and scheduled for 1pm on Monday, September 28", he said.He then went through the motions, robotically going through the steps of the surgery, the risks, consequences, and then had me sign the paperwork. And ended abruptly with a,
"Do you have any questions?"And in about 5 minutes, I had signed away my life to the hands of this man standing in front of me.
"Are you ready for this?" he asks,
"I don't have much choice do I?"I say to him, fighting back tears. He touches my shoulder, and says,
"You're young. I have every confidence that you will make it out just fine."I couldn't eat any more of my breakfast at that point.
All of Saturday and Sunday just went by too quickly. And before I knew it, it was already about 6pm in the evening on Sunday when I had to say my goodbyes to my kids. It was a school night so it was time for them to go home.
How do I say goodbye? How am I supposed to hug them and not feel like it might be the last time that I hold them in my arms? How do I face them, and still act like I am the adult? How did I sign my life away to this man who will be cutting me open putting these kids at risk of losing their mom? Across the room I see my husband. And his stoic expression tells me that he is not fazed at all. I nod and I draw strength from him. I say a silent prayer, hug each of my babies one by one, one last time that night, and tell them,
"I love you and I'll see you when I wake up."Those were the hardest goodbyes I ever had to make. I do not know how to explain it. The words escape me.
After dropping off the kids that night at home with their grandma, aunty and uncle, my husband comes back to my hospital room. We had not had a chance to say our goodbyes yet. And we lay on the bed just holding each other for about an hour. Yeah even that moment had a time limit, lol. We just sat there and talked about everything BUT the big surgery the next day. And right before our time is up, my husband sits on my bed, holds me at arms length and buries his head at the top of my chest, ever so lightly placing a gentle kiss right below my collarbone.
"Kalofae ia gaia (Your poor chest babe). This will be the last time I see it like this, in this perfect state. After tomorrow, a scar will forever be on here."He bends his head down and I feel tears falling from his face.
"I love you Tarrant. We will be ok."And then I say to him what I said to my kids.
"I'll see you when I wake up."He hugs me one last time, and says,
"I have the utmost faith that you will come out of this, better than before. God will not fail us. This I believe. I cry because of what you will be going through. My poor wife. I wish I could take your place."And with that we say a prayer full of thanksgiving, gratitude and pleas for help and comfort. We thank God for allowing us a chance to fix my heart problem, grateful for the signs that brought me to the ER. We give praise to God for his blessings in our lives, especially for the blessings of our children. I hug my husband one last time with all of my heart and might and I am left once again alone, in my gown soaked in tears and sweat, with Law and Order still playing on TV.
I remember being wheeled into the operating room. It was stark white, with the brightest and most blinding lights I have ever seen in my life. Now I know how a deer feels on a dark road in the middle of nowhere. Everything smelled so sterile, and felt so cold. I remember feeling so alone, so very alone.
I was surrounded by so many doctors, nurses and techs, the room full and abuzz with quiet energy. But everyone was talking about me or at each other, with no one talking TO me. I started to feel a little panic rise up inside of me, and I quickly quell it by looking up and asking God for his strength and comfort over me. Right at that moment, I feel someone hold and squeeze my hand, lean down by my ear and tell me,
"You're ok. Everything will be ok. We are going to take great care of you."And right as I'm hearing this, a feeling of great calm and peace washes over me, as the anesthesia kicks in and I drift off to sleep. The last thing I remember was thinking about my husband, sisters and family in the waiting room, in the for long 4 hours right along with me. God please be with them and give them the strength to get through this.
The next thing I remember is waking up in what seemed like a tiny, enclosed room. All I could see through the haze was a woman standing at the foot of my bed, and a TV that was on. I try to talk. But nothing comes out. I try to open my mouth but my throat is burning, on fire and is hurting so bad. What feels like a pipe is stuck in there blocking any coherent words from forming and coming out.
Starting to feel panicked that I can't get the woman's attention (Why won't she look my way? Who is she anyway? And shouldn't she be checking on me?), I try to move my hand to wave to her. Nothing. I can't move my arm. It feels really heavy. My feet can't move either. They are dead weight. Where am I? What is going on? I started to get really mad. I'm awake but no one can see me. I am stuck, a prisoner in my own body!
And then it hits me. I am alive! I made it out of surgery and that pain in my throat is the breathing tube they told me about. But I don't see my husband. Where is he? He said he was going to be right here next to me when I wake up. Maybe he already went home to the kids.
The woman still doesn't see me. She doesn't know that I'm awake. So I will all of my energy into my left fist and I start pounding like mad on the bed. I hear alarms going off. Ok that should get her attention. And it does, and she runs over and holds my hand in place and tells me to calm down, that I can't get worked up. I point to my throat, it takes everything in me to lift my arm and bring it up to my throat. She says,
"Yes, its the breathing tube. Does it hurt? Ok, we need to leave it in there for a little while longer until we know you can breathe on your own ok? Hang on. Let me get the poster so you can communicate with me."So she brings me a laminated sheet with some questions and pictures on them. I point to the one that says, when will the breathing tube come out? She repeats what she already said. At this point, someone alerted my husband that I was awake. I finally see him come into my peripheral view. I want to look at him, to see his face. But I can't move my neck in his direction. I guess the anesthesia hasn't worn off yet.
I don't see the questions that I want to ask next on the sheet. So I grab my husbands hand and start forming letters in his palm. I spell out "Kids". My husband reassures me that they are ok. I spell out "Masaga" (Twins) next, in reference to my sisters who I knew were waiting out there all day. Someone runs out to get them.
And then the tears start coming. I am alive!!!! A great joy overcame me and I felt like someone breathed new life into me. My next question was, "Home". My husband laughs and tells the nurses,
"Oh yeah, she's doing great. She's ready to go home."About an hour after I wake up, my breathing tube was removed and I am allowed to take sips of water. I was so thirsty, so extremely thirsty but they kept limiting my drinking.
I spend the night in the ICU, while my sisters slept outside in the waiting room, They really wanted to be with me, took off work the next day so I wouldn't be alone my first night after surgery. But no visitors were allowed in the ICU. Just knowing they were out there though gave me comfort and strength.
I woke up the next day and was allowed to eat breakfast. I didn't have an appetite, but I forced the food down because I knew that the sooner I reach the post-op goals, the sooner I get to go home.
I took my first steps that morning and I was taken off of my IV pain meds. I even walked a couple of laps around the ICU floor, connected to my monitors of course. Every step towards recovery, was one step closer to going home. I was on a mission: to beast my way out of here. And to get home to my family.
My recovery was going so well and so fast that I was moved back to to the Med-Surg ward the next day where I spent 2 more days recovering. And then on Friday, October 2, after a week of undergoing procedures, 4 hours of open heart surgery, 2 nights in the ICU and then 2 more days in the ward for a total of 2 whole weeks in the hospital, I was finally going home!
That last day in the hospital, I took my first real shower, dressed in my own clothes for the first time in 2 weeks, and waited for my husband to take me home. The real recovery was going to happen over the next several months, but at least I'll be with my family where I belong.
What felt like a long crazy dream was finally coming to an end, and I couldn't help but feel nostalgic at the place that I lived in for 2 weeks, and feeling a pang of homesickness for the people that took care of me everyday. The team of nurses were amazing. I couldn't have made it without their watchful vigil and TLC all throughout my long stay.
I will miss this place, as much as I don't want to admit it, but I will miss it. I was really going to miss being catered to, all meals cooked and delivered at the touch of a button, and watching TV all day, every day. Some crazy part of me really felt that this was the vacation that I've been wishing for, even though I had to get my chest cut wide open to get it :-). Hey, every vacation has a price right? Hehe.
And I will forever be indebted to my great care team especially to the surgeon who held my heart in his hands and fixed it to be better, stronger.
My long journey was finally coming to an end. And all I could do was look up to the heavens and thank God with all of my new heart. My husband and I rode in the car reveling in our new leash on life. And couldn't wait to get home to our babies and continue our lives together.
And that concludes my first trilogy.
Thank you for sharing in my story. I hope you found something useful in my very long babble. Thank you for all who prayed for us, visited us, thought of us, and offered help. God bless you all and may your hearts continue to beat or click for those you love.
Join me next time for "Life With a Clicker - A story about life after heart surgery."
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