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.


  1. Jaci, WOW I want to reassure you that it will all be okay. You and your sisters have shown remarkable strength ~ no doubt by the grace of God. I feel writing was a much needed outlet for me while Lindsey's dad handled his cancer. I gained strength with every word. I wrote email updates (don't know how to "blog"). Every time I hit "send" I felt comforted that friends and family were praying for the same results. I felt safe. Mr. Bell had what some would call set-backs, but I did my best to look beyond to the ultimate outcome--His health, well-being, peace of mind. When he would get angry at "a step backward", I would get out all the responses to my latest email to bring his focus to all the good in his life. The best part, I learned, was the GOOD has always been there! It does carry us on. God bless you, Jaci. We will always be here for you and your sisters! Love, Mrs. Bell

  2. Jaci, you are pure love. Tears are streaming down my face. Your mom has been on my mind and in my prayers without ceasing. You will get through this. I truly believe it. God is so good. I love you. Dana

  3. Jaci, as I sit here with tears streaming down my face, I am amazed by your strength and courage to share your story. Know that while you have your mom's back, your Alexian family has yours. While you may find it hard to know what to ask for, we'll try to provide what you need. My thoughts and prayers are with your mom, you and your family as you face future challenges & victories.

  4. HI Jaci,
    I wish I had the appropriate words to comfort you. I know that even in the bleakest hour that God is near and always listening and I have found much comfort in that knowledge the past few days. Your mom is strong and a fighter but I know that her faith is even bigger and that she will get through this, no matter the outcome, as will you and your family. Praying for big miracles and please know that you guys are not alone. I wanted to visit but am not able to due to all the germs there but please give her a big squeeze for us and tell her that we love her and Connor needs his nanny to play card games with. And if there is ANYTHING that I can do from here, please ask. Remember to take care of yourself and your baby.



  6. Jaci I just heard about your Mom. I want you to know that we in California are praying for her and for your family. She is blessed to have you so close. Keep your Faith. You sound so strong and wise and I know it is a monumental responsibility that you are dealing with, and God will help you through this. We will keep you and Mom in our prayers and thoughts. Be strong. I know how much she loves you.
    Bobette, Sherri, David and Carole, (your Aunt Marlene's California family)

  7. Jaci, I am praying for you, your mom, and your family. I know how you are feeling...I was just in your shoes a few months ago. God is good and I KNOW that he will answer your prayers and hears our prayers for you. You are a wonderful daughter to your mother and you will be a wonderful mother to your baby. I know from experience that the Alexian family that we share is amazing and strong and our Alexian sisters have prayed for miracles before and we will keep on praying. Take care. Elaine Pieropan