Wednesday, January 9, 2013
The Nightmarish Miracles Before Christmas - Part 4
I'm not hyperbolizing when I say that Christmas eve was one of the most emotional days of my life. Mood swings have been common throughout this pregnancy, but I'm not sure I've ever gone from one extreme to another quite so deeply as I did this day. It started high. I slept fairly well the night before... Brian was doing so, so much better... my in-laws were heading to the airport and would be with us later that afternoon... and it was Christmas Eve. Brian felt cheerful, too.
"I'm getting out of here today, Linds." My eyebrows shot up in surprise. And a little laugh of disbelief escaped.
"You mean like, out of the hospital?" I asked, but I knew my husband well enough to already know the answer.
"Yep. I really think I can swing it."
"Well... I don't think people just go home after spending two nights in the ICU." He was feeling great. Sitting up in the bed for the first time in 32 hours, eating his breakfast of french toast and scrambled eggs (no butter, no salt in the cardiac ICU...), after having just taken a walk up and down the hall. When he asked his nurse if he could get up and walk, the nurse was pleasantly surprised and stuttered over his answer for a second (uh... yeah! Sure... just a second... let me go see if I can get someone to walk with you). Minutes later another nurse came in to disconnect wires and make sure the IV's were ready to move. Brian stood up and stretched his legs, all the while breathing audible sounds of relief. He bounced on his toes and kicked his heels up behind him. His joints all popped and cracked, causing the nurse to laugh and giving me a mental image not unlike a lanky, animated puppet. All up and down the hall, doctors smiled their approving smiles in his direction, (Hey! one said, You look too good to be in here!) and I beamed... I felt so proud of him; for the first time forgetting the terrifying events that caused me to be proud of a few steps taken by a grown man in the first place. He was alive! Walking! Better! And now feeling ready to go home.
"Yeah, it's probably not standard, but I can do it. All they're going to do after they move me from here is keep me on the monitors and make sure I take my meds on time. I can do that at home. They'll let me go." He looked at me with a smile, a nod, and that confidence in his eyes that I've grown to know so well. The one I don't argue against anymore because I've never won against that look... not in the 10 years we've been married. So, maybe he could swing it and get out of the hospital that day... but should he?
"Okay - I believe you. But, as much as I would like to have you home for Christmas, I don't think it's a good idea to leave the hospital today. I think it would be better to stay on the monitors for another day."
Our conversation was interrupted by morning rounds and the doctor spoiled Brian's ambitious plans by saying he was a little concerned about portions of the monitor's readings last night and so wanted to keep Brian out on the hospital floor for not one, but two more days. Tainted by my happy mood, I was relieved to hear the news. The more monitoring, the better. I wanted them to be sure he was fine before they discharged him.
I went home to shower and came back just as they were about to take Brian up for an MRI. He was still feeling great, and they had just gotten word about the new hospital room he would be moving into soon after the MRI. That kept me in an optimistic mood, and I was sure that the MRI would come back with good news. While he was gone, his new hospital room was being decorated for Christmas by good friends, and some other good friends dropped off a couple of bags of those cinnamon smelling pine cones that intoxicate me every time I walk in their presence. It's Brian's favorite smell in the whole world, and I was so grateful when my facebook request for them was answered so quickly. It was fun to drop by his new room and see the progress being made... lights, stockings, a 3-foot-Christmas tree, tinsel, balloons, posters... and now bags of cinnamon smelling pine cones. Christmas was going to be just fine.
The mood shift started happening just after the MRI. "It wasn't great news..." Brian started explaining to me. "Actually, it was kind of bad news." He went on to say that much of his left ventricle had died. The entire bottom portion of his heart (the apex) was all scar tissue now and a few other places in the ventricle had full thickness scars as well (as opposed to partial thickness... the muscle wall in your heart is very thick and, evidently, the wall can scar just a partial way through it. This would have been better news because the part that is not scarred will still contract and pull the scar along with it, whereas a full thickness scar will just not contract at all). Final EF value of 47 (remember, normal is 55-75)... not expecting an increase. It's true that most of my college education is rusty, but I do remember and know of the extreme importance of the left ventricle, and this news scared me quite thoroughly.
A 16% decrease in the efficiency of his heart function.
Could be as high as 39% depending on what his normal EF value was before the heart attack.
But at least 16%.
16% less oxygen getting to his muscles with every pump... would he be more tired?
"So, is this going to affect your day-to-day life?" I wondered aloud. Brian just shrugged his shoulders.
"What about exercise? Will you still be able to play basketball?" Another shrug.
"And..." this terrified me the most, "what about the life expectancy of your heart now? Does this... change that?" Shrug.
We held each others eyes as ten seconds passed between us with no words. Hundreds of images, thoughts, concerns and future projections sifted through my brain and landed as a thick mist of pain covering every inch of my feelings. Brian has always been so active... bouncing along to life, always walking briskly (how many times have I rebelled against this by simply stopping in my tracks and refusing to move until he apologized for leaving me in the dust?), moving tirelessly through the house to whip everything back in to shape (how many times have I been frustrated at him for making me nervous by cleaning around me in circles?), always priding himself in speed and efficiency. As a child, people called him 'Tigger' because of the constant bounce in his step. Which he still has when he gets excited about something... oh how I love that bounce... "Always moving," his mother says about his childhood; and then adds with a laugh, "well, I suppose he still is, isn't he!?" Yes... yes... I laugh in return. Even his illegible handwriting stands as a sign of speed. But... will all this be changed somehow? I wondered. What if this was all taken away... It drives me crazy sometimes, this extra energy... yet when I thought about who Brian would be without it...
...it broke me.
He is alive... I know that's the important thing, and of course we will adapt and adjust wherever we need to with as much optimism as possible. But, oh how it hurts to think of such a large part of him dying.
And, oh does it kill me to think about the years this could shave from his life. That thought is so painful I still haven't dealt with it yet.
I wasn't ready for Brian to see my concerns, though. He is such an optimist and historically has always appreciated a positive reaction to any sorts of bad news. So I swallowed as much of my emotions as I could and was pleased that they only appeared as a soft layer of new tears. "Well," I said through a concerned smile, "maybe you'll just have the energy of a normal person now." He smiled. And I think it was real.
My phone rang and broke the tension.
"It's Eric," I said, holding the phone up for Brian to see. "Do you feel like talking?" He hadn't been up to talking on the phone to anyone yet (even his own parents), so I was pretty sure I already knew the answer.
"Not really," he said, as expected. "... But, should I?"
"There are no 'shoulds' yet. If you'd like to talk, then I'll let you answer it, if not, don't worry about it. He's calling my phone, so I'm sure he's not expecting you to answer... he's probably just checking in to see how you're doing."
"Okay, then... not yet."
"Do you want me to answer it now or call him back later?"
"No, you go ahead. You should answer," he replied with a definitive nod. He hates it when I screen calls. He reached for the book a friend had brought, Enders Game, as I stepped out of the room to say hello.
I had received a priesthood blessing the night before in which I was reminded that I had many friends around to help lift me up so that I could be strong for Brian during this time, and the timing of Eric's phone call brought that reminder to the front of my mind. I've never been good at masking my feelings... and, truthfully, I've been okay with that. I haven't actually seen much benefit come from hiding my true feelings before and, conversely, I have seen much good come from the honest (and sometimes raw) emotions I wear on my sleeve. But this felt different somehow. I felt a strong pull (even a responsibility?) to show optimism and strength for Brian. I knew the time would come when my side of the story was truthfully outlined, but in these first hours of his recovery I wanted him to focus on himself. He has always been so good at holding me together, or at putting me back together when I've crumbled, but I felt sure that I did not want him to be worrying about me just yet. But my emotions were crumbling, fast, with the new news... and how fortunate that I was called out of Brian's room at that perfect time to be able to let them crumble in the hall with a friend. By the end of the phone call I felt like I had a band-aid covering a gushing wound... but knew it would hold long enough to go to Brian with a smile to pass along the love from Eric and Katie and then, thankfully, leave to go pick up Brian's family from the airport.
I saw Brian to his new, beautifully decorated room out of the ICU, kissed him, promised to be back later that night with the family to celebrate Christmas Eve, and left. I was headed first to pick up McKenzie so she could accompany me on the drive. I hadn't seen any of my children since we'd left for the hospital almost 42 hours before, and McKenzie had started to break down a bit. I knew she needed the drive with me and hoped (and prayed) that I could focus on her enough to fill her needs. My phone buzzed in my pocket as I walked through the hospital doors and I opened the new text from my sister, Michelle. "Hey, just wanted to say merry christmas eve. You should grab an extra jello cup to celebrate, or something." My breath puffed from my lungs in a laugh and came back in as a sob. I hadn't talked to her yet... but her voicemails and texts had been such a strength to me, and I knew she was just what I needed at that moment. I pressed the 'call' button underneath the words of her text, cried with her for the whole twenty minutes it took me to get to McKenzie and felt, again, that the fresh band-aid would hold for a bit.
It was weird to have to make small talk with McKenzie, and then again with Brian's family when they crowded into the van. We all wanted to talk seriously about Brian, but felt the inappropriateness of it with McKenzie sitting in our company. So, much of the drive back to our house was spent in coded language or silence. Thankfully, I feel comfortable and loved in my relationships with Brian's parents, so there was no added stress to impress or to be something I'm not. But, oh, the stress of the night was crushing me. Stress coming from wanting to make my children comfortable. Stress coming from trying to make Christmas Eve memorable and happy for everyone. Stress from trying to keep that band-aid sufficient in hiding my emotions (remember how terrible I am at that?) and stress when the emotions kept leaking out around it anyway. Stress from those sweet, innocent, little faces looking to me for some comfort and stability. Stress from trying to keep Christmas traditions alive on my own, and more stress from trying to feel fulfilled by them when they had been so altered by Brian's absence (I'm terribly attached to traditions). All the while thinking only of the hospital. Just wanting to get back. Frustrated by my role as mother. I just wanted to be wife.
But, as slow as the minutes seemed to be ticking by for me, they did tick by. We ate a wonderful Christmas Eve dinner brought in by a couple of families in the ward, and then McKenzie sorted and counted all the presents underneath the Christmas tree while we cleaned up (Dear McKenzie, it doesn't matter who gets more or less... let's just be grateful for what we have... and next year, please don't sort and count the presents again, okay?).
We had a small program where the kids all sang Christmas songs, and opened a few presents.
We then piled into two cars along with wrapped Christmas pajamas and the gifts to Brian from the kids and headed to the hospital. He looked so good. Happy. Excited to see his family. So normal, laughing with his brothers. But I saw the energy in his eyes deplete quickly. Like an old computer battery that doesn't hold a full charge for more than an hour. I was glad we had only brought the pajamas to unwrap. His dad read the Christmas story from Luke and then we kissed him goodbye for the night; wishing him a happy Christmas Eve. I would be coming back later that night after the kids were in bed because we had asked Santa to come to the hospital, and we had much to do to get ready for him.
Back at home, my in-laws pumped their own air mattresses, changed their own sheets and helped me set up beds for my kids downstairs. My role of hostess: fail. They helped themselves to their own snacks while I packed two big suitcases full of everything we needed to make Christmas a success at the hospital, comforted me when I started to crumble, and while I was gone they got my (incredibly excited) children to sleep, tidied the house and eventually went to bed themselves. My role of hostess: double fail. How grateful I was to feel comfortable in that failure, though. Bless them for being so wonderful.
Just before I left my home, the band-aid burst and I sat on my bed trying to contain the new flow of tears that was gushing. I came to have a new understanding of the phrase 'worried sick' as I knelt at my toilet and shortly after, worked up enough courage to leave my bedroom to get the suitcases into the car. As I backed out of my driveway, the tears started flowing again so I reached for my phone to find Dad.
"Hey, Lindsay..." he answered gently. "How are you?"
I shook my head back and forth, knowing he could not see, yet not being able to speak. "Dad..." I eventually squeaked out, "I'm crashing."
"Oh, Lindsay... I am so sorry." If a voice can bleed, I heard that happen in those words that night. We talked through my fears of the future. We talked through my fears of the present. We talked through my fears of what could have happened had things not lined up so perfectly that Saturday night.
And we talked, briefly (because I couldn't handle it for long), about my fears of losing Brian early because of this. I see my parents, now approaching 60, and realize how young they still are. How much life could be ahead of them still. And not knowing whether or not this heart condition will take Brian's life - even 30 years from now - is hard for me to handle. When we lost Jess, there were several people who came out of the woodwork to share their own stories of losing a child. I felt like I had been welcomed into a sort of exclusive club I didn't know existed before, and it was comforting to me. It was comforting to see these women ten, twenty, thirty years beyond their loss and to see that life, indeed, would get better and that I would, indeed, be happy again someday. This time, as people have come out of the woodwork to share their heart attack stories, the exclusive club we've been welcomed into is not so comforting. We don't fit very well. We're far too young, and the reasons behind the heart attack separate us even further. The conversations themselves are nice and appreciated because I can feel the love and concern coming from the other members of the club, but the words, unfortunately, do not help much.We can't relate very well to restricted diet conversations, or managing stress conversations, because... that's not the problem. Several people have pointed out that they had a heart attack _____ years ago (ten is the highest so far), and that they're doing great now. 'You'll be just fine...' they say. Again, the love and concern is comforting but the words leave me empty. Ten years? I think. In ten years, all of our children will still be living at home. We will have a senior in high school, a couple of teenagers, a nine year old boy, and potentially younger children... In ten years, Brian will still be new to his ophthalmology practice. We will most likely not own our house, and will still be paying off loans from medical school. Ten years? I was hoping you were going to say at least forty. Where is the club for people who have a coronary artery spontaneously dissect? Where are the healthy 70 year old men who can say they had a heart attack 40 years ago? Why haven't those people come out of the woodwork? Because it's too rare. So rare. So poorly understood. No one can give us answers because... no one knows what the answers are. I suppose it's that uncertainty that is killing me. My dad's tears through our conversation (and the tears shed by Brian's dad just before I left the house that night) comforted me like a warm blanket. Made me feel like I was not overreacting (something I'm not always certain of during pregnancy), and that I was not alone in my stress, worries and grief.
"How is Brian taking all of this?" my dad asked as I pulled into the covered parking garage at the hospital.
"Well..." I thought back to the few serious conversations Brian and I had had together, and to the way he talked to all the visitors that had been coming through his room. He was... Brian. Joking. Laughing. Downplaying. "He doesn't really get it yet," I concluded. "He hasn't really taken any time to think about it, I don't think... he's been reading a novel in all of his down time, and whenever he talks about it he kind of just shrugs it off his shoulders and talks about getting out of the hospital." I went on to say that it was a good thing, though. Because I was such a mess. I was grateful that we weren't going through it at the same time... and hoped that I would be healed enough by the time it hit Brian to be a real strength for him. "Yep... you're probably right," my dad replied.
Anyway, I wheeled my two suitcases into the hospital, up the elevators and into Brian's room. I had stopped crying by that point, but two separate groups of people asked me if I was okay... I must have looked terrible. Brian noticed I'd been crying when I walked into his room. "Hey Linds... everything okay?"
"Yeah..." I said, brushing his question off.
"You've been crying..." he observed.
"It's just been... a long day," I answered.
"Is it hard with my family here?" he worried. I was astounded that his first thought for a reason behind my tears that day would be because his family was here. He knows how much I love them and how unstressed I'd been by their coming in the first place. I took it as a pat on the back that he didn't know how bothered I was by the fact that he'd almost died, or by the fact that we'd just found out that the (arguably) most important organ in his entire body was irreparably damaged.
"No, it's not that," I answered. I knew he wouldn't let me off until I offered a reason for the tears so I offered a piece of the truth, "I guess I'm just feeling a little overwhelmed because all of my roles in life seem to be in high demand today... wife to my sick husband in the hospital, mother to my thrown-off-balance kids, hostess to the family, daughter/sibiling/friend to all the people who have been looking for updates, baby incubator, Christmas elf... I'm just... really exhausted."
In my ambition to set Christmas up just right in the tiny room, I ended up causing stress for Brian, and that set my tears off again. So much failure in one day... I apologized, tried to hurry, kissed him goodnight, and left so he could get some rest and so I could be there for my kids when they awoke on Christmas morning. I didn't sleep much that night and ended up 'worried sick' two more times throughout the night.
But the sun came up again the next morning and I heard excitement coming from the downstairs where all my kids were confined to stay until I came to get them. Grandma and Grandpa were up and talking to them. I rolled out of bed and looked at my ragged face in the mirror.
I stared into my sunken eyes and slowly shook my head. How do you start Christmas when Christmas feels so far from your heart? I wondered.