Wednesday, May 28, 2014

My Help Comes From the Lord

(I don't know if anyone else wants to read these posts, but I want to record the wonderful the things the Lord has done for me lately. And if someone else reads it and God gets the glory, then all the better.)

As surgery grew closer, I had a lot of people asking me if I was getting nervous or suggesting to me I must be nervous. There were tears in people's eyes as they hugged me telling me they hoped the surgery would go well. I remember the same thing before brain surgery years ago. There was something behind those words, those tears and those hugs. It was as if loved ones weren't sure if it would be their last interaction with me. The night before brain surgery, I let the answering machine pick up all my calls. I so appreciated their thoughts and their intentions but there was fear in their voices and I had to stay far from that. The Lord had given me peace that passes all understanding and I didn't want to do anything to jeopardize that.

On the Wednesday night before heart surgery, I was hearing a lot of these comments. As I walked from church supper to the sanctuary for prayer meeting I started to wonder why I felt so confident if everyone around me looked at me with sad and fearful eyes. Was I being ignorant? Was there something I was supposed to be afraid of? Did I not see the whole picture?

The answer to those questions seemed to come straight from the Lord. My lips started to audibly recite Psalm 121. This is a chapter from the Bible that I memorized with my kids years ago. To be honest, I hadn't thought of the verse in a very long time yet here it was welling up from my heart and rolling off my tongue as if I just learned it last week.

Here's what it says:

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.
He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.
The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.
The Lord will keep you from all harm
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

The Lord was using the verse to remind me why I had such peace and confidence. I could face surgery, or anything in life, because my help comes from the Lord! Amen!

This is such a testimony for scripture memory. Learn it. Tuck it away. And when you need it, it's there! I needed it that day and am so thankful that though I wasn't consciously thinking of it, it was there. 

Saturday, May 24, 2014

A Quick Progress Report

Monday will be 6 weeks since surgery.
Here are some milestones I reached this past week:

~I can now put on shirts over my head which means I don't have to wear the same two shirts all the time. I called the whole family out to see me wearing a t-shirt. I don't know if they were excited but I sure was!!!

~I am driving again. The doctor told me I could start driving again a week and a half ago but I wasn't ready. I drove yesterday and today and it went well. I wasn't near as excited about this as I was about the t-shirt because, personally, I refer being chauffeured around;)

~I am down to taking just a couple Motrin before bed. 

~I logged 15.5 miles this week! I am enjoying my morning walks and really soak up the beauty of the time of day... birds singing, wildflowers swaying and gentle breezes blowing. I don't miss a thing.

~I have started adding some very short jogging segments into my walks. Don't worry... the doctor said it's OK (remember, he's the one who operated on my heart and has done tons of these surgeries). I'm easing into it but am so excited with my progress.

The only trouble I still have is with sleeping and getting comfortable for the night but that will come with time, I'm sure. 

Thanks for the prayers and support!

Friday, May 23, 2014

An Unsung Boston Hero

Two years ago I ran almost every step of the Boston marathon with a complete stranger, Bernard Castro. By the end of our 26.2 miles we were no longer strangers but had become good friends who had seen each otherthrough the world's greatest marathon in almost 90 degree weather.
Last year I returned to Boston but was unable to finish because of the horrific bombings. Bernard followed my progress on Facebook from Texas.
Last fall, I eagerly registered for the 2014 Boston Marathon and looked forward to finishing what I started last year and being part of the remembrance that would take place.
Then I started training... hard. During this training I started paying closer attention to chest pain and other heart symptoms that I had been experiencing for some time. This led me to seek medical help and within a couple of months I was diagnosed with an anomalous RCA, a condition known for killing athletes.
Last Monday, 364 days after I only made it 25.5 miles in the 2013 Boston Marathon, I underwent open heart surgery to repair my congenital defect.
That brings us to today. Today was the 2014 Boston Marathon. I was registered for that prestigious race. I had a race packet, race number and race shirt waiting for me. Instead if crossing that famous finish line, I'm learning to take short walks and do breathing exercises. I am thankful to The Lord for where I am and how far I've come but all day my heart has been in Boston.
During the same time that the marathon was being run, a packaged arrived for me that contained a brand new pair of running shoes in my size. They were from Bernard. He knew what I would be facing emotionally today.
For the first time since all of my health issues unfolded, I cried. Those shoes are a symbol to me that I will be back. Back to Boston? Maybe. Back to running? Definitely.
Thank you Bernard (and family) for sending hope in a New Balance box. And as the Bible says, hope does not disappoint.

Our First Home School Graduate

A little over 16 years ago, I was great with child... our first. One day I came home and told Casey that I felt the Lord was telling me that we were supposed to home school our child. I knew this had to be from the Lord because Casey and I are both  the product of public schools and didn't have anything against them or any reason to do anything different with our own chidren. Furthermore, we only new one or two people who home schooled so we didn't even really know all of what homeschooling entailed. Naturally, I never thought Casey would go for the idea but to my amazement, his response was, "I couldn't think of a better person to teach our child than you."

We both gushed at the thought and then agreed that we would just do the homeschooling thing until she was in middle school because homeschooling longer than that would be weird.

So I started right away, of course. I bought a belly belt that had speakers in it and hooked it up to my cassette playing Walkman because I was cool like that. And so my little unborn baby was listening to Bible songs and Mozart while I walked, sat and slept. I also collected a few children's books and began to read them out loud to my navel. As soon as we brought our firstborn home from the hospital, I started with reading flashcards and weekly trips to the library, where I spread out a blanket on the floor, laid her on it, and read to her. I was homeschooling!

By the time Kelsi was old enough to officially start school, we were surrounded by homeschoolers. God is so good. All we had to do was obey and He provided others to help us along the journey. Many of those "others" were homeschooling their middle and high schoolers and, to our surprise, they weren't weird!

Now, 16 years later, we may or may not be weird. The jury is still out on that. But, weird or not, our little Kelsi was home schooled all the way through high school and this past Saturday, she graduated.

When I saw her coming up the isle in her cap and gown my mind drifted back to that day when the Lord led us to home school. Then it flipped through the many memories we made together on the home schooling journey: learning to read, doing experiments, playing Play Dough, doing co-ops, writing papers, going on field trips and so much more.

I'm so thankful that I got to be the one there for that. We sacrificed a lot and it wasn't easy but, yes, it was worth it. I'm also beyond grateful that I got to be there last Saturday to see her graduate. There were many tearful eyes that day as her daddy and I walked up on stage to give her the diploma. God was merciful to our family to allow me to be there to witness and celebrate such a momentous occasion for our family.

Thursday, May 15, 2014

I Took A Walk Today

I took a walk today... not my first but for some reason I thought this one would be different.
I took a walk today and was going to go farther than I have all month.
I took a walk today and imagined that I would head out the door with a little pep in my step.
I took a walk today with my new shoes on. They were going to make me faster.
I took a walk today and planning on pumping my arms a little, stretching a bit and even doing a lunge or two.
I took a walk today and instead of feeling victorious, I battled discouragement.
I took a walk today and felt sore, slow and limited.
I'll talk a walk again tomorrow.

Wednesday, May 14, 2014

My One Month OHS Anniversary

So... it was brought to my attention that today marks one month since my open heart surgery (insert confetti and party blower-sounds). Here's what I have to show for it:

1 heart bursting with gratitude for the support I've received. Well, it's not literally bursting. That would be very bad.
2 much time on Facebook. It's my connection with the outside world right now:)
3 servings of pizza! I had been a clean eater before my surgery but have slipped a bit since I'm not prepping my meals and because sometimes pizza just makes everything better!!
4-ever gratefulness for my husband who has done the lowest of tasks for me (and I mean the lowest) and has never complained. He should get a trophy.
5 cramped fingers from writing so many thank you cards. I've enjoyed every stroke of the pen!
6 inch scar down the middle of my chest. As my mother says, I finally have cleavage;)
7 children who are happy the Lord carried their mom through all of this.
8 enough each day thanks to friends who have brought meals- thank you!
9 lives?? I think that's why I have the name Kitty... I must have nine lives!
10-der chest area. Boy am I sore and limited but I see improvement and that's what matters.
11 floral gifts. I have so enjoyed all of the fresh flowers. Research shows that they actually help people's moods.
12 hospital bills. Boy does all this stuff add up. And I thought driving our van to Macon was expensive- you should see the ambulance bill! So thankful for health insurance and some extra help that came our way to cover our sizable deductible. God has provided!
13 kisses a day, between Casey and Emmie. He is always kissing me and she is constantly climbing up on something high so she can kiss me without making me bend over. I love it!
14 episodes of Andy Griffith watched late at night. Sleep doesn't always come easy lately but Mayberry makes it all better.
15 offers to help watch our children. We have so many people who are willing to help make things easier on us.
16 tubes, wires and IVs connected to me right after surgery. I was like the bionic woman!
17 loads of laundry per week that I don't have to do right now. This recovery thing does have its perks!
18 dreams where I am in the middle of a dire situation that requires me to give some physical effort. Right in the middle of each dream, at the moment where I'm most needed, I realize that I can't finish the task because of my surgery and I let everyone down. I haven't enjoyed this recurring theme in my dreams.
19 texts per week from awesome friends and family checking on me. Don't underestimate the power of reaching out to someone in a time of need. It goes so far!
20 times, at least, that Casey has probably wanted to hold a pillow over my face instead of rearranging them- AGAIN- until I finally got comfortable
21 cards in the mail... and each one made my day!
22 year-old nurses were taking care of me and I was so impressed by their servant hearts.There's not enough money in the world to compensate for some of the things they have to do on a daily basis.
23 books read with the little ones. This down time has given me lots of snuggle-on-the-couch-and-read time.
24 days since I left the hospital the first time. That was such a great feeling and I never would have guessed that I would have had to go back. You never know what a day will bring.
25 hundred prayers prayed for us, I'm sure. Can't believe how many people, many whom I don't even know, have been praying for me.
26 hours of Bible reading. I may be physically weak right now but I'm studying and praying that the Lord will make me spiritually strong through this time.
27 days of wearing the same pajamas. OK, maybe not that many but it's gotta be close. They're button up so I can get them on and they're oh so comfy. I'm all about comfort right now!
28 pain pills per week. 2 Motrin in the morning, 2 Motrin at night is what I'm down to. That's still a lot for a girl who doesn't like to take any pills but I've come a long way already and before long, won't need any.
29 staples removed. Yeah!! (and, no, it doesn't hurt to have them removed... surprisingly!)
30 days behind me but no idea of how many are ahead of me. None of us know so I am trying to live each one in a way that matters for eternity.

Ups and Downs in the Past 30 Days

In ICU the day after open heart surgery
     9 days later. First time getting dressed. Libby fixed my hair.
                                         One and a half weeks after that....back in the hospital.
                                                        Two weeks later: Mother's Day.

Friday, May 9, 2014

Flashback: My Chiari Story

I recently had a fellow mom and Chiari patient ask me about my story with Chiari Type 1 Malformation. After I spent a good amount of time writing this email to her I thought I might as well post it here in case someone comes along whose struggling with a similar situation. Hopefully my blog won't forever be about health issues:)

Anyway, here it goes:

 When my 5th child was 4 months old I went from being an extremely active, energetic 29 year-old to being mostly bed ridden in a matter of weeks. One day I was getting ready for a clown job (yeah... I was a professional clown!), putting on my make-up and turned my head. With that one turn of my head, I had the strangest dizzy sensation I had ever felt. It was as if my head turned but my brain didn't. Even though it was an unusual sensation, I chalked it up to low blood sugar so I grabbed a snack before I headed out the door. In the days that followed, the dizziness worsened and I continued to try to eat the feeling away. Within a week, I realized that it wasn't low blood sugar but just couldn't figure out what it was. Everyday, the dizziness worsened and I quickly lost a lot of my independence. 

The strange thing was that I would have days where I was fine and could conquer the world (or at least my little portion of it:) and days where I could hardly get out of bed. In addition to the dizziness, I was experiencing numbness/tingling in my extremities, muscle fatigue, brain fog, heart palpitations, mild sleep apnea and mild gag relfex issues. All of this came on so quickly and with out warning. 

I finally went to the doctor after a particularly scary episode at the library. I had taken my children for our weekly visit when the dizziness hit so bad that I knew I couldn't drive home let alone gather my children and get them in the car. I stumbled to a phone in one of the offices, clinging to the book shelves the entire way. It took everything I had just to dial my husband's phone number! He left work and picked us up. We sat in the parking lot trying to decide if we should go to the ER or home. We chose to go home and I saw my primary care doctor the next day.

I spent the evening in bed, unable to even move my jaw without being dizzy. The next morning I woke up feeling completely normal...!!?? I went to the doctor anyway and tried to explain what was going on. Our doctor, John Hartman, MD, was a man of God who seemed to have the gift of discernment. Between that and the fact that I didn't just run to the doctor for everything, he was prompted to send me for a STAT MRI that very day. What a gift that was considering the average Chiari patient takes 4 years to get an MRI and diagnosis. 

With the Chiari diagnosis, I was referred to Dr. Donald Behrmann in Orlando, FL which was close to where we lived at the time. It turned out that he specialized in Chiari surgery and was confident in his ability to do an aggressive first time surgery so his patients didn't have to have multiple surgeries. He was, however, your typical specialist who didn't really listen to me and was quick to write off some of my symptoms. He was even a bit skeptical about doing surgery in the first place because my cerebellar tonsils weren't down very far and wondered how I could be so symptomatic (he kind of suggested that it was all in my head- no pun intended:) . He ordered a more detailed MRI and with that, decided that surgery was recommended.

I had decompression surgery (C1 lamenectomy, suboccipital crainectomy and duraplasty) on May 16, 2005. When the neurosurgeon spoke with my husband after surgery he said that my compression was pretty bad after all and he was very glad that we chose surgery. As soon as I woke up in ICU from surgery, I knew that I was improved. My time in the hospital was painful but I was encouraged by the absence of my symptoms.

Upon discharge, I was told that I wouldn't be an independent person for at least 8 weeks. What I heard was that I would be completely healed and back to normal life in 8 weeks. Boy was I in for a surprise! A few weeks after my surgery, I was brushing my teeth and thought that the bathroom mirror was shaking on the wall. I reached my hand out to steady it and immediately realized that it wasn't moving but that my dizziness had returned. This was a very discouraging moment. After several months of recovery, I found that I still couldn't make it through the day taking care of my 5 children under 7 years of age. My neck would get too tired that I would just sit on the kitchen floor, with my head against the wall, praying for help. I would often put on a neck brace because I just couldn't hold up my own head. When this would happen, my brain would get compressed and pre-surgery symptoms would return, although to a lesser degree.

When I went back to the surgeon for help, he brushed me off and told me that his head would hurt too if he had five children to take care of. I understood that it seemed like a lot but this was my normal. But at that point I couldn't take care of my own family and I needed help (By the way, we had a tremendous amount of help at that time. Our family and friends brought meals for 4 months!!!). 

I returned to Dr. Hartman, my primary care doctor, who kindly referred me to physical therapy. This was a huge turning point for me. Though the sessions were hard, I was finally regaining strength and range of motion in my neck. If I remember correctly, it was over a year before I really felt normal again and was able to care for my children. To this day, I don't understand why physical therapy isn't a standard part of the post-op recovery process for everyone who has that surgery. 

Over the next few years, I would still have occasional dizzy days but, by the grace of God, they became fewer and farther between. Now, 9 years later, I rarely experience any symptoms of any kind related to Chiari. I have had two more children, which I had previously thought would be impossible and have run 7 marathons. I thank the Lord often for the miracle He worked in my life and for the overall good health I have experienced since my surgery. 

That said, I continued to have heart issues over the years and wrote about that here on my blog

All in all, for what ever it's worth, here's what I would suggest for you.... don't give up!!!! Keep trusting our Heavenly Father to bring you through this and to grow you through it. Looking back, as hard as it all was, I wouldn't trade the experience for anything because it grew me as a person. It helped me to appreciate the sacrifices my husband made for me, developed perseverance in me and made me more sympathetic for others with health problems. It also helped me to be thankful for the littlest things.

Secondly, don't give up on pursuing an answer with the doctors. In my limited experience, I've found that specialists are a different breed and are quick to dismiss people and symptoms. I often wonder if there are so many patients who go in with symptoms that they've made up so docs always skeptical. I don't know but they're not in your house, dealing with the loss of quality of life that you're experiencing so keep going until you find someone who will listen and will help.   I had a daughter with a rare, and potentially fatal  intestinal malformation (required surgery at 3 months of age), I had Chiari and more recently this heart defect and THEN the near-death experience I had last week with the cardiac tamponade. And in all this, I had to push to get answers and to get help. Continue to take control of your health care and ask the Lord to guide you to the help you need. Pray also, of course, for healing- that's not too big for the Lord, either!

I also found some help in an online Chiari support group. The night I signed up for a group, I cried and cried at my computer desk. I wanted to be normal and healed and not need a group so it was hard to accept. Anyway, that was a help for me for a time. I would be cautious though because some of those people are only on there for attention, I guess, and go a little overboard.

Speaking of support, I learned the hard way how important it is to reach out to others in my time of need. When you reach out and let someone bless you in your time of need, you allow them to receive a blessing as well. The Lord promises to bless them abundantly for their willingness to help. It's also part of growing for you because it's humbling to have to call a friend and tell them that you can't bathe your own children. The Lord knows that I need some humility in my heart and, even though the lessons are hard, they bring eternal rewards. God promises grace to the humble- I'll take that, please:)

As far as your children go, I totally understand the helpless feeling you have. I know what it's like to not be able to take care of them and to feel like you're not being the mom you need to be. I am so sorry that you're in that place right now. Having gotten to the other side of that and finding myself there again to some degree because of my heart surgery, I'd like to suggest that you ask the Lord to help you redefine the mom that you need to be. Perhaps in this season, you aren't going to be in the yard with them and driving them all over town for their activities. I'm struggling with that now because my oldest is graduating next week and I am so limited in what I can do for her. I just spent 2 hours on line trying to order some decorations and plates and such and finally gave up. I can't take her to her rehearsal or throw her a proper graduation party. I'm not even sure if I can go to all of the activities planned for that weekend. But I am choosing to focus on the things I can do. Maybe you can lay and look through a stack of books with your boys or watch them play Legos on the floor for an hour straight. I don't know their ages but I know that so many moms are so distracted these days by being so busy that perhaps you can find blessings in a season of stillness where you can spend true quality time with them.

Your children can also learn a lot from your response to your situation. They may grow up to be more compassionate and long suffering because of what they see in you. You may be giving them gifts that most moms aren't able to bestow upon their children. God is so big and may have bigger plans than what you can see at this time.

I truly hope that this is just a season for you and that you will find comfort and hope in my story and healing and answers with time. 

Thursday, May 8, 2014

It's All About Perspective

I can't drive.
I can be thankful for those who are willing to run errands for me.

I can't hold my little children.
I can hold each moment with them in my heart.

I can't help my little ones with normal physical needs.
I can let them feel that they're helping me.

I can't lay in my bed.
I can sleep in a recliner which is better than most people in this world who have sub-standard sleeping arrangements.

I can't work in the yard.
I can sit outside and enjoy looking at God's beautiful creation.

I can't cuddle or be intimate with my husband.
I can feel even deeper bonds forming as I witness him tenderly caring for me. I can also enjoy holding his hand and linger in gentle hugs, standing cheek to cheek.

I can't wash dishes or clean around the house.
I can... well, who cares about that?? :)

I can't lift over 5 pounds.
I can lift heavy emotional burdens for friends and loved ones to the Lord.

I can't go running or get any physical exercise besides a short walk each day.
I can walk!

I can't function normally without the help of pain medication.
I can feel myself healing everyday.

I can't prepare a meal for my family.
I can feed them Daily Bread.

I can't soak in a hot bath.
I can be thankful for running water and showers:)

I can't stand seeing my usually physically fit body look so frail, broken, swollen and defeated.
I can choose to focus on developing what's on the inside because that's what going to last anyway.

I can't do a lot that I am used to but I can use this as a season of growth and be thankful that it is just a season. 

Monday, May 5, 2014

Not Just Another Sunday... The Last Chapter

OK, not really the "last" chapter because I made through all of this so there is still more to be written in my life story:) But hopefully this will be last part of the story of what happened to me last Sunday.

Overall, my experience at the hospital in Macon was excellent. I have been there many times in the past few months for procedures, tests and pre-op and I have received only the best of care. So as I share what I went through as I was going into surgery, please remember that this was urgent and emergency surgery so things were being pulled together for me up until the very last minute. 

The surgeon wheeled me up to the OR area while Casey was taken to a waiting area. I recall the surgeon being concerned for where Casey was so that he would be able to find him after surgery. I appreciated that. Next thing I knew, my gurney was parked at a registration desk where the anesthesiologist "met" with me and was asking me questions about my medical history. I have no idea how I made it through that in my state... I even had to hold a pen to "sign" a consent form!

I was then rolled into the OR where they placed me on a hard, flat, narrow table. If you or someone you know has ever had open heart surgery then you know that lying flat is quite painful and likened to say, an elephant standing on your chest. It's not something that I've done voluntarily since before my surgery so this move came with a few moans from me. In fact, I must admit that I was pretty close to a wimpering little baby during all my awake time in the OR. Wait...awake time in the OR? Yeah, there's a reason most people don't ever experience that- not fun!

My complete incision was then prepped three times with vigorous scrubbing and swabbing which caused more moans from me. At the same time, they were putting  a mask on me (I was already on supplemental oxygen) that had rubber edges and didn't seem to have anything coming out of it. I'm sure that's not the case but in my state, that's how it felt. So there I was, laid out bare on this flat table, with medical personal swarming about me, having my sore chest prepped with disinfecting chemicals and I thought I couldn't breathe. As the mask was being pressed tighter to my face, I managed to turn my head to the side and get a gasp of air. In that same breathe, I reminded them that I was awake ("Hello?? Remember me? The patient?). At this point, in all the rush, I was concerned that they had forgotten to put me to sleep and that I was about to feel the scalpel!

After I felt four bursts of acid in my IV (OK, probably wasn't acid but that's what it felt like:), I begged to be put to sleep. My only consolation in all the horror of my physical condition was that I would be asleep and out of anguish and here I was, a concious participant. I'm guessing that they had to keep me awake as long as possible because of the critical nature of my vital signs and because everything was so urgent so I understand. However, I still wish those memories could forever be erased from my memory because they were so difficult to bear. It was also challenging to be cooperative during that, but besides my moans and logical requests to be knocked out, I was a good patient... given the circumstances.

Fortunately, that was my last memory from the operating room. While I slept, the surgeon removed 8-9 staples and re-opened the bottom 1.5 inches of my existing incision. He created a pericardial window and drained 500 ccs of fluid from the sac around my heart. It is my understanding that the normal amount of fluid around the heart is only 20 ml. (Another 500-600 ccs of fluid was drained in the days to follow.)

I was later told that Casey had been alone in the waiting room and was at his end emotionally. That morning was like a hurricane and when they wheeled me into surgery, I was so unstable that he just couldn't think straight. He was just to his breaking point when my sister, also shell-shocked, came in. They both hugged and cried until the emotional pressure had been released. Before long, friends filled the room and stayed by Casey's side until I came safely out of surgery. We were also surprised to find out later on that as soon as they heard about me, Casey's dad (from NC) and my brother (from FL) hopped in their vehicles and drove hours to be with us. 

Little did we know at the time, but heaven was also filling up with prayers on my behalf from people all over who heard of the urgent prayer request. I am still blown away by the number of people who have called my name to the Lord. It's encouraging and humbling at the same time. Thank you!

Somewhere between being at the registration desk right before entering the OR and opening my eyes in my hospital room, I have memories of a lot of convulsing that caused me to roll my shoulders back against the table/gurney many times. Between that and being flat, I guess, I am more sore than I was when I came home from the open heart surgery.

I was partially awake in the recovery room but would never allow myself to open my eyes. I only wanted to be asleep or at least have everyone think I was asleep so no one would bother me. I didn't want to talk, to move or to be poked or prodded. I just wanted to lie there and not feel a thing. There was another patient in recovery who was having a difficult time with all of the tubes and such when she awoke so she was needing a lot of attention from the nurses. I was relieved that they were focused on her and hoped that they wouldn't notice me. 

I know I was in and out in recovery because later, my surgeon asked me if I remembered him talking to me in recovery, which I didn't. I do remember feeling so much better and feeling relieved of all the.. the... feelings that come with heart failure. It's too terrible to describe. I couldn't believe that with one surgical procedure I was stable and relaxed. How the day had turned and how everything worked out was such a miracle.

Eventually, I was wheeled to a room in the same cardiovascular step-down unit that I had spent several days in after my initial surgery. (I was in room 411 instead of 410.) After having done so well after my first surgery I would have never guessed that I would end up back in the hospital! Anyway, I awoke to my sweet husband, who is always by my side, looking very much relieved. My sister, pastor and other dear friends from church were there, too. I immediately had tears in my eyes because that's all that would come when I thought of what I had just endured. That whole morning seemed never-ending and only got worse with each passing moment. I had fought to be strong and controlled but now it was over and I just wanted to bawl. I didn't cry though because I was in a lot of pain from surgery and from the chest tube. So once again I had to hold it together because it was physically best for me. It's still not in my best interest to cry, but I suspect one day soon, it will all come out.

In the mean time, I am overwhelmed with thankfulness to my Heavenly Father who will never leave me nor forsake me. I am also constantly aware of the blessing of having so many people who love me and have supported me in many different ways through this time. Physically, I'm back to square one with my recovery so I'm slow. But spiritually I'm soaring and desiring to bless the name of the Lord every chance I get as long as I have the chance. We're not guaranteed tomorrow and so as long as it is called today, I want to give Him praise.

Saturday, May 3, 2014

Not Just Another Sunday.... Part 2

Casey called the ambulance, left a message for the doctor and called my sister, who was already on her way over. Before long, our house was a fury of activity. Kelsi was trying to pack us a bag but was also terrified and sobbing. The camp founder's wife had slipped in and was by my side praying quietly and peacefully over me. Our camp director, who is EMT trained, had come in to check on my vitals and just be there until we were on the ambulance. Others were trying to make sure they were with my other kids and keeping them in an area of Camp where they wouldn't see the ambulance when it came in. Friends were on the porch praying and looking stunned.

Casey was fanning me over and over while a couple people kept rotating out cool wash clothes for my forehead. All my strength had left and what little I had was spent on staying concious. I was praying, reciting scripture in my head, focusing on objects, memories,.... basically anything I could do to keep controlled, relaxed and "alert". I knew that if I lost it, it would only be worse for me.

I was also ocassionally pleading with Casey, whether in a few words or in look, for him not to let me slip out of it again. I truly felt that I wouldn't come back. Now, let me just say with certainty that I'm not afraid to die. I am so thankful that my heart and life belongs to the Lord and that I have eternal salvation through Jesus Christ. I can't wait to get to heaven, now or in 50 years! (Of course, I feel that my work here isn't done as long as I have 7 children to raise but even that's not for me to say.) My life is in the Lord's hands for however long I'm here. I just hope that when my time comes, as it will for everyone on this temporary earth, that it will be peaceful. What I experienced last Sunday was anything but peaceful. It was horrific!

I was also pleading for that ambulance to come. We knew we could have made it to the hospital faster than the ambulance could get here but I couldn't get to the car or ride in the car. I also knew that being taken right into the ER from the ambulance would be smoother. So I focused on seeing the ambulance pull up. Two people here at Camp went to the camp entrances to guide the drivers to our house and to also have them turn sirens off so that my children wouldn't be made aware of what was going on. 

It took 35 minutes for the ambulance to arrive! Apparently they have 2 vehicles and one was already on a call close to us and the other had to come from Macon, which is where we were heading.  The 3 paramedics on the ambulance were very kind, compassionate and caring, which is very important to me. But unfortunately, when it came to the technical part of their job, well... that's another story.

First of all, there is a widely used and taught assessment for this condition that emergency responders should be aware of. I had all of the markers they should have been looking for. "The overall mortality risk depends on the speed of diagnosis, the treatment provided, and the underlying cause of the tamponade (mine was recent heart surgery). Untreated, the condition is rapidly and universally fatal." And so, as our responders became aware of the state of my vital signs, all of which unarguably pointed towards this condition, they remained clueless and chose to drive 40 miles to the hospital with no lights or sirens and at regular speed, stopping at every stop sign and light. One of the men told me reassuringly that they chose to drive at that speed so that they wouldn't make me concerned or anxious. I mentioned that they were thoughtful, right??? I was actually thinking the entire ride that I will feel so much better when my care was out of their hands and in the care of the hospital staff. They also stopped before pulling into the hospital because they remembered that they hadn't called in yet to let the ER staff know that they were bringing me in (please refer to bold print above). They didn't want to get in trouble, so they backed up and called in before they would become visible to the folks in the ER. Between that and some of the questions they asked ( "Do you have a history of chest pain?" - Uh, I have 35 staples in a 6-7 inch incision down the center of my chest.... YES! I have chest pain!!), I felt very much like we were in an episode of green acres.

Unfortunately, when we were brought in to the critical care unit of the ER, my care was very much the same. No one was rushing or had any sense of urgency about them at all. There were several times that Casey and I were the only ones left in the room. My eyes would plead for him to do something to help me and to speed things up but I also didn't want him to leave my side because he was fanning me and that was the only comfort I had from head to toe. 

One of the big hold ups in the ER (as it was in the ambulance) was that no one could get my pulse ox. Instead of realizing that my heart was failing and my pressures were to weak to detect, they spent all sorts of time trying different equipment, cords and even getting oximeters from the pediatric area. No one seemed to realize that my heart was failing and I was quickly dying. Even the MD on call came in, introduced himself and told me they would do a few tests through out the day to see if I was having gall bladder or other similar problems because of my stomach pains. It was as if the fact that I had just had heart surgery was irrelevant to him.  I reminded him that it wasn't "stomach" pain per say but that I was feeling a sensation of fullness and pain in my upper abdomen and that I was nauseated but that I needed something quickly and couldn't hold on much longer. 

FYI- That light blue area is where the fluid was collecting. Over the course of the next couple of days, I had over 1,000 ccs of fluid drained from that area. Can you, with or without medical training, guess why my upper abdomen felt "full" and was sore to the touch??? 

I know, like us, you're at least in SMH mode about the medical staffs' lack of urgency and knowledge but here's where and why none of that matters: The Lord numbers my days and He's in control. Some may trust in horses (medical staff), some may trust in chariots (ambulances?) but we trust in the name of our God. My help comes from the Lord, and ultimately, He put the things in place for my life to be spared and here I am to write about it and to give Him the glory. Even when the surgeon was at my bedside after the initial surgery 2 weeks ago and I thanked him for what he did for me, he humbly responded with a heavenward gesture and said, "Don't thank me, thank Him."

Finally, the MD did an echo on my heart per phone instructions from my heart surgeon, who was on his way. After literally 2 seconds of viewing my heart, he ran to call the surgeon and tell him that there was a lot of fluid around my heart. It didn't look good but at least we were finally getting somewhere.

In the mean time, my hands had turned dark purple. My feet, which I couldn't see, were numb, tingling and ICE cold. And before long, I felt a very cold sensation taking over. My heart was shutting down and was ceasing to deliver blood to my extremities. I was weakly telling these things to Casey as he tirelessly fanned me in an effort to keep me concious. I did lose conciousness again, not sure how many times, one or two maybe, and woke up convulsing and vomiting. Not fun:(

When the heart surgeon arrived, he began to put a fire under everyone. He quickly brought in an ultrasound tech and I remember him commenting out loud to her that there was more fluid than there was heart and that the entire right side of my heart was compressed from the fluid. At some point he leaned in to me, asked me to open my eyes and look at him while he let me know that he would be taking me back into surgery to reopen part of my incision and create a window into the sac around the heart so he could drain the fluid. 

He quickly began to get things in place for surgery and then returned to my side to monitor my blood pressure. The last time Casey remembers seeing my blood pressure reading, it was 60/30 and with that, our very competent surgeon rolled my bed himself towards the operating room.

I guess there will have to be a part 3 to this because that's enough for me today:)

Friday, May 2, 2014

Not Just Another Sunday

I was doing great in my open heart recovery. Great, I tell you. I was actually surprised with how smoothly everything was going. I was taking it easy and mixing short periods of light activity followed by rest, just like the doctor ordered. My range of motion was increasing and my pain level was decreasing. Each day, I felt stronger than the day before.

Then Saturday, 12 days after my surgery, I woke up from my nap feeling like my upper abdomen was a little tight. I thought that maybe I had sunk too far down in the recliner and that my abdominal area had been a bit bent while I slept. I walked a little that afternoon, sat outside while I watched my sister play with the kids on the playground and then had dinner at the cafe here at Camp. After dinner, my stomach still didn't feel quite right but it wasn't alarming. I just felt so full even though I hadn't eaten very much for dinner.

At bed time, I was still feeling a bit sick but it seemed to be my stomach, not my heart. By 11:00 PM, I called to Casey in the bedroom to bring me a pot. I was not feeling well at all but could only say that my upper stomach felt full and that I was nauseated. I attributed the full feeling to indigestion.

When I woke up Sunday morning, the house seemed empty. The family was at the Camp cafe for breakfast. I went to the bathroom but could barely make it back to the couch without passing out. My upper abdomen was painful, uncomfortable and I thought I was going to throw up any moment. I lay on the couch wondering what was wrong when my oldest child came into the room. I was so happy that I was not alone.

She saw that I wasn't feeling well and was so sweet to ask what she could do to help me. I wasn't even sure. I felt that I needed my pain medication but didn't want to take it on an empty stomach. I couldn't eat, however, because my stomach was so upset. I decided I needed to get up and walk to see if I could get the full feeling gone, which I was sure was gas (Hey, I'd had a lot of medications running through my system!). She helped me stand up but I was back on the couch in no time because I was so faint.

We decided to call Casey but thankfully he came in right then. We just didn't know what to do or what was wrong. He wanted to call the doctor but I didn't want to bother him on a Sunday. We finally agreed to call our sweet friend Dottie who was a cardiac nurse. After hearing my symptoms, she advised me to call the doctor right away or to go straight to the ER or even call an ambulance. I told her there was no way I was going to call an ambulance but that I would put a call into the doctor. Dottie told me that she thought my issue had something to do with too much fluid so I called for a scale before calling the doctor. I had been weighing myself at the same time everyday per discharge orders to watch for extra fluid retention.

It took all the strength I had to walk a few steps to the scale and get back to the couch. I had gained 5 pounds in 24 hours- not good. After that, things spiraled out of control and went down hill very quickly. I went from thinking I had indigestion to feeling like I was hanging between life and death in just a matter of minutes. After being on the couch for a few minutes, I lost conciousness in a very painful and scary way. Casey says when I came to, I was convulsing and vomiting. I was ready to go to the hospital and was even ready to call an ambulance- a huge deal for me....

I will finish this post tomorrow. I'm ready to call it a day:)

Crowd Support

One of the huge draws to running the Boston marathon is the intense crowd support. Basically the whole city of Boston comes out to stand along the 26 mile race course. It seems to me that their only goal is to make each runner feel like they're the only one they came to see and that they're in first place. Somehow, in the sea of faces and the thousands of runners, the crowd actually accomplishes just that. And it's that motivation and transfer of energy that keeps the runners going.

I didn't get to run Boston this year because I was newly recovering from open heart surgery. I missed the race expo and all of the city-wide, pre-race hype. I didn't get to be there for the remembrance that would take place in honor of last years' tragedy. I didn't get to ride the bus to the athletes village and sit in the fields at the village talking pacing with other runners. I missed the starting corrals and the starting line. And of course, for the second year in a row, I didn't cross that famous finish line. But...

... I didn't miss out on the crowd support.

I have been running a race of a different kind. Each step has taken great strength and determination. That strength has come from the Lord and through the many loved ones who have been, and are still, cheering me on. I feel as though every step of the way, the course has been lined on both sides with crowd support. 

Just like in Boston, I have been cheered for and cheered up. I have received prayer, encouragement, cards, monetary help, meals, texts, visits, childcare, phone calls and so much more. 

It's just like running the marathon but with out the fanny pack!

Thank you! We couldn't be running this race without you!