Jeep!

So, there was this lovely break in the weather. It became insanely warm for April, but they sky was a beautiful blue, and I had to drive to Richmond. Imagine that. :) I never drive to Richmond.

The top is off the Jeep! I pull out of the gas station on my way to my favorite hospital to obtain a new fashion accessory (a Holter monitor) when a guy in a pickup truck rolls down his window and asks me if I can handle that Jeep?! Um, yeah! I smile as I leave him behind...far behind.

There is a learning curve involved in driving your Jeep... Remember that you have a very small gas tank and you can only drive 200 miles before you must once again fill your tank. Always wave courteously to other Jeepers (Sorry...but JK's are excluded from this particular courtesy...According to Andrew, JK's aren't really Jeeps.) ;) Don't forget the music...it's much better than listening to the droning of the 18 wheeler next to you... Your Nalgene will get warm...consider an insulated bag. Last but certainly not least. Don't forget the sunscreen!!!!! Ouch! ;)

Results!

We finally received an email regarding Will's test results from Atlanta. The short answer is "Yes, it appears we have a Complex III Mitochondria Disorder with a fatty acid oxidation issue."

What does that mean? It means that his body doesn't make enough energy and he struggles to build muscle.

The long answer: We received a 15 page letter from Dr Shoffner explaining his findings as well as what the next step is. Once I have the opportunity to understand half of what he wrote, I'll fill you in. In the meantime, we are scheduled to see Dr. Teasley, Will's neurologist, next Thursday morning. She will hopefully be able to shed some light on what some of this extensive letter means...

The Best Laid Plans...

Ever have one of those days when you go, "This is SO not in my plan." If you're like me, you have more of those days than you would really like to admit. Well, Friday is gonna be one of those days.

I'm being treated to the hospitality of MCV Hospital and their Cath lab...again. I really think I shoulda asked for the punch card the first time. If you visit the lab a certain number of times, don't you think you should get a free cath? I mean really. I paid for this bruise! Can't I have one of them for free?

This time, I get to receive two such lovely bruises...one on each leg. They're gonna insert one catheter in each leg so that they can install a little clamshell device in my heart to keep the blood flowing where it should have been flowing all along. It is amazing what they can do these days! No broken ribs. No chest tube. One night in the hospital, then home!

Ok. So there is a down side. They actually told me that I couldn't run for a while. It was almost a deal breaker, but my husband's cool logic prevailed. So no running. Dr Lotun said three months. I choked and he said..ok...maybe you can run one mile realllly slowly at six weeks. We'll see if he sticks to that post operatively! Hopefully when I do return to running, I won't be treated to anymore exciting rides to the hospital...

Oh, and thanks, Dr Rehm! Industrial strength asthma meds are amazing! Look, Ma! No coughing!

Taking Shelter...

So after a really bleak blog that I almost erased, which I get to do since I am the author, I decided to leave it...and assure all that I am really not mental. I really don't do bleak well. It just isn't my style. I just needed a moment...or two. :)

Sometimes I think that people see the outside...they see us muddling through each of these issues and they think we remain unfazed by it. It just isn't the case. We are fazed...and we are struggling...because it is just all...hard. Do we have hope? Yes. (ok...so consider the previous post an aberration.) Because we do have faith that we are held in the shelter of the wing of a sovereign God. Do we always feel sheltered. Nope. But feelings lie. My head knows that, but my heart is a bit weary of bearing the grief, so bear with me...

On a different note, I received a phone call this afternoon from my new, favorite cardiologist. Yes, he really did call me. Well, ok, his nurse, my friend, Shirley, actually dialed the number and said, "Hey, do you have a minute?" then put said doctor on the line. After reviewing the echo and the catheterization notes, it appears that open heart surgery may indeed be off the table and they can repair what is really a flap with the clamshell device. He researched Bruski (ok..I am so not a Patriot's fan, so don't bellow...and I just don't have the energy tonight to Google him...) who as a linebacker who had an ASD that was repaired with the clamshell device. Dr Hess's point was that if a linebacker could be tackled by someone weighing 300 lb and have a clamshelld device remain safely attached to the heart, then I should be able to run a marathon with one. Hmmm...so, we get to meet...our third cardiologist! Thursday. The famous Dr. Kasirajan may just have to find someone else on which to operate. :) We might actually get the shortest recovery possible... However, this story has so many twists and turns in it, that I'll just sit back and wait for the rest to unfold...

The Lord has a plan...we'll just let him show us what that plan really is! He is determined to teach me that I really am not in control...I don't have control issues. Really. :)

There is Grief in the Journey

I have kinda had a day. Actually, I've kinda had a lot of days. The last two years have been anything but a picnic. They've been more like a marathon that never, ever ends. You conquer one hurdle and you haven't even brought the second leg down when the next hurdle is right there. (ok. I know that marathons don't have hurdles...unless there is some sadistic race out there, but bear with my poor analogy!) So you keep going faster and faster until the hurdles get so close that you can't possibly jump them fast enough and you...fall.

That's kinda where I am. I know that some of this is a direct result of the drugs they gave me yesterday during the heart cath, and some of it is just...fatigue. Not the physical fatigue of having worked hard, but the emotional fatigue that says, "Again???"

At church on Sunday, someone asked me how my kids were handling all of my recent heart issues. I looked at them and said, "Their brother had brain surgery. To them, you go to the hospital and have surgery, then you come home and recover..." It made me realize the extent to which our family has been challenged...and the fact that you have to just keep putting one foot in front of the other because what's the alternative?

And then there was today...the day after my heart cath and ... we are all kinda done. The kids are spending a fair amount of time away from their parents because Billy is at work (they essentially see him on the weekends) and I am busy shuttling the boys to doctor appointments...(What we would do without Randy and Erlene stepping in is beyond me! They are physically holding us together!) and now I am being hauled off to the hospital, going to doctor appointments, and having lots of tests. Oh, and heart surgery. The children woke up, telling one another what to do and how to do it all while ignoring their own responsibilities. And then there were the missed expectations of what I could do today...or better yet, what I couldn't do, both mentally and physically and their lack of desire to understand.

So, the kids who need structure lack structure. The younger children lack discipline. No one is getting parental face time. And everyone is unhappy. There is NO joy in Mudville.

And I don't know how to help because right now, there's no joy in my own heart...just a vast sense of...grief. It isn't that I don't understand God's sovereignty or the fact that He is most definitely at work in our family, it's just the feeling that says, "Lord, it's been raining for forty days and forty nights! Is it going to end? and will my children love one another when it does?" I know God has a plan, but Monday morning is just so hard. Lord, I believe. Help my unbelief!

Who Can Understand the Hand of God?

For some of you, this is a bit of a review. Humor me. There really is a point to boring you by repeating the story... :)

So, two weeks ago, we started down this lovely cardiac journey. I have this harrowing experience at the gym, I undergo every cardiac test in the book except a heart cath, and then the good doc sends me home two days later with no explanation as to why it happened. Five days later, it happens all over again...an asthma attack causes me to cough really hard, I get dizzy and almost pass out, have classic signs of a heart attack, and my oxygen saturation is low enough that I should be unconscious. But this time, on my tour of statewide ER's, I am told I am having a panic attack. Really. Only this time I am totally fed up and I actually tell the ER doctor that he is wrong and that I am so not taking his anxiety medication. Btw, this really is not the way to make friends with your ER doctor. So, he simply discharges me and allows me to walk out of his ER with no assistance, and holding the wall with one hand because I am still dizzy.

So, the pulmonologist actually puts the picture together and realizss that the hole in my heart is the issue. He gives me "industrial strength" asthma medication and sends me to the head of cardiothoracic surgery at the local hospital. Only, this guy is not available, so he makes an appointment with his associate because he doesn't want me to wait any longer than necessary. The associate is new and no one knows anything about him.

In the meantime, while waiting for this appointment, I call Shirley, a lovely woman in my church who works in the cardiac clinic at MCV. She chats with a doctor who says, "You don't want to do this in Fredericksburg." Miraculously (this is where it gets good...) they have four cancellations the next morning. This apparently never happens... Shirley tells me this as she is making me an appointment for the next day, and says, "This is a God thing. This never happens!"

So, the next morning we meet Dr. Hess. What a riot! He actually reads through all the information, then walks in and says, "Tell me what happened." I give him the story, including what the doctors said, and his chin falls open and he shakes his head, and says, "Would someone find this woman a doctor?" Ah, I like this guy! Not only does the man have a sense of humor, but he is an amazing diagnostician. Oh, and he reads the chart! And listens to his patient! They just don't make 'em like this anymore!

So, as we chat, he sets me up with a new echo (they didn't measure the pulmonary pressures in your echo in the hospital???), and he schedules me for a heart cath on Monday. ("They did everything BUT the heart cath, which would have been the test you really needed!") This way, when we meet Dr Kasirajan on Wednesday, all of the tests will be complete and Dr Kasirajan can perform his magic...

Btw, Dr Kasirajan is the top artificial heart transplant doctor in the country. He was at Cleveland Heart Institute for ten years...which btw, is the top heart hospital in the country! He is the top heart surgeon in the state of Virginia.

So why is this all so cool? Well, let's review. First, I have a full set of cardiac tests, but no diagnosis. After a second event, I have a wrong diagnosis, but a confirmation of the symptoms. I have new asthma meds that might actually control my uncontrolled asthma. And the coolest part of all? If any of the other doctors had made the diagnosis, I might not be meeting the best surgeon in the state of Virginia. Someone else might have already done this surgery. But the coolest part of all? There is a non-invasive surgery that actually repairs the heart without a device...they actually sew the hole shut...without open heart surgery. And guess who can perform this surgery? Yep, Dr Kasirajan!

Dr. Hess was concerned about putting in the clamshell device because of my running. He was concerned that the long-term studies don't reveal its efficacy when under that kind of pressure. So, the only other option I would have had is open heart surgery. By the non-diagnosis and the wrong diagnosis and then four miraculous cancellations, I met with an amazing cardiologist who will have everything done for Dr Kasirajan, and I end up with the top cardiac surgeon performing the better surgery with the least recovery time. Now tell me. Is this a God thing or what?

Over the last two years, our family has really been hard hit. The medical issues alone have been staggering. While I truly believe in God's sovereignty, I was really beginning to wonder what in the world He was thinking. So, in this instance, while I was totally frustrated with the doctors and wondering when the next episode was going to hit, the Lord was paving the way for me to have a much better physician for the repair. If this had been diagnosed at the other hospitals, the likelihood is that the surgery would have been performed already...and it wouldn't have been the surgery that would have been best. Isn't that amazing? It must be a "God thing." :)

How many ER visits can YOU make in one month?

Is there a world record for legitimate ER visits in one year? If so, I think we're out to break it!

Andrew was playing basketball with Chris. The ball bounced off the rim, hit Andrew's hand, and Andrew's thumb gets close and personal with his eye. Thumbs and eyes are not supposed to connect.

After deliberating for what felt like forever, I finally google eye injuries. Light sensitive? Check. Blurry vision? Check. Painful? Check. That won us a ticket to...the ER!

Can I just say that I love the pediatric ER at MCV? They are amazing. There was no delay (10 PM on a Friday night!), the staff were amazing and pleasant, and best of all, efficient! The coolest part of all? When they put the dye in Andrew's eye to see the extent of the corneal abrasion, his eye was flourescent yellow (and they let me look!)! It was so cool! His corneal abrasion was incredibly significant, so everyone wanted to take a peek at it...except for two residents who were looking for the eye trauma and were really disappointed that Andrew's thumb wasn't still stuck in his eye. :) (You know you're at a teaching hospital when...)

The good news is that it is healing well. The bad news...his vision is still a bit blurry. We return in the morning to have it checked for the third time, so we're praying that his vision is improved and there will be no long term issues...

By the way, this means we are up to four ER trips this year...all legitimate. Anthem may hate us, but we may just make that famous little record book! Yikes!

No, thank you. May I have a new diagnosis, please?

By now, most of you know of my misadventures at the gym two weeks ago. Run three miles no problem. Stop running, and the grim reaper is standing beside me. While that really is dramatic, it was a totally frightening experience that no one could explain. $30,000 of medical testing later, they send me home with no answers. Six days later, I walk into a concert hall and it's like a recurring nightmare. Asthma trigger leads to coughing leads to...blackness and dizziness that just won't stop. The medic looks at my oxygen saturation and says, "You should be unconscious." I can't respond because that would take oxygen and then I would be unconscious!

My condition makes said medic unhappy, so he calls in the rescue squad. Oh joy. My second ride in an ambulance in less than a week. These guys are late on the scene. I'm still dizzy, but improving. Oxygen saturation is actually almost 90! Woohoo! So they take me to the ER. The doc there decides I'm having a panic attack and thrusts a sedative at me. Uh, no thank you. Seeing as he cannot explain why my oxygen saturation would be 78 with a panic attack (and I know that those two don't go together!), I decline the sedative and tell him he's wrong. I don't think he appreciated that. :)

So, off to the pulmonologist I go. He says, "You need industrial strength asthma medication." :) Yes, thank you! In five minutes, this guy looks at us and says, "It's your ASD."

An ASD is a (birth defect) hole between the atria of the heart. (Mine was diagnosed last year.) Normally, the blood flows through the hole in a direction that is of no concern. However, the coughing from the asthma causes an increase in pressure that then reverses the flow through the hole such that the blood never actually makes it to the lungs to pick up oxygen. So, I black out and get chest pain. The brain and the heart don't like to be without oxygen. As the coughing eases, the pressure goes down and the flow returns to normal and the dizziness and chest pain ease.

So, now I get to see a cardiothoracic surgeon to get the hole in my heart repaired. We meet him this Wednesday...Am I nervous? A little. Am I afraid of the surgery? Not really. Do I understand His plan? Um. No. But I do trust that the Lord has me firmly in His hand. I just pray that the children will be able to see His grace throughout this whole process.

Valuable Lessons Learned

I learned a few valuable lessons this week. First, if you aren't necessarily feeling in top condition, it may not be the best time to do a tempo or interval run. There are natural consequences that can occur...like almost passing out at the gym, setting off what is believed to be a cardiac event that encourages the gym management to invite the local rescue squad to the party. Well, not to be outdone, the local hospital then extends an invitation to stay...one of those invitations that you are obligated to accept...but the hospital, all in your best interest, of course, is more like the Hotel California...you can check in but you cannot check out...at least not until they administer every cardiac test known to man. And I do mean every cardiac test known to man.

Secondly, always, always make sure that you have 3 days of clothing in your gym bag, because once they send you to the hospital, you are going to need every one of those garments. And since they will be doing all kinds of stuff to you like putting you on treadmills and tables that tilt, you are going to want at least 2 days of those clothes to be gym clothes. Despite what their invitation states, the hospital is NOT a place for rest. It is, however, a place to exercise your fasting skills. Since you are scheduled for multiple tests each day, and each test requires you to fast, they don't actually feed you until 4:30 in the afternoon.

Thirdly, always give thanks and verbalize your appreciation to those who have served you tirelessly. My nurses scheduled 8 tests, chatted with multiple doctors, ordered meds, and in general, kept track of me wherever I was which was no mean feat since I literally traversed the hallways multiple times a day on the way to the next test! Awana, Kristen, and Jo...I am indebted to you for your constant concern for me and for your patience with me. You listened even when the cardiologist didn't. ("You have asthma? Really?" "Um...did ya read the chart?")

And thank you my friends, Erlene and Anita, for taking the children on short notice with no clue as to how long you would have them. Andrew and Chris...well done! You are amazing young men.

Lastly, but far from least, thank you, Billy, for staying with me. You made sure that all of my needs were met, even if it was a pillow for my back, or a shoulder for my tears. You listened and were patient when you didn't have to be. You even hooked me into the internet! Thank you.