Open Heart Surgery #4 - Will they ever end??

After last week's appointment, our cardiologist said we should start discussing plans for another surgery to place a pacemaker and to hopefully repair her leaking mitral valve.  Crossing fingers that it can be repaired because replacing it with a new valve would mean open heart surgeries every 5-10 years for the rest of her life.  Ack.  When our cardiologist brought it up to the surgeon he said it was way too soon after her last surgery for another one.  "I just really don't think we have the luxury of waiting he responded"!  It's so hard when the surgery team always seem to be at odds on what to do!

One morning I was praying and praying that there'd be some way to fix her valve.  As I did so, I had such a clear mental image of our Savior when He prayed, "Father, please take this from me!"  He went through something excruciatingly hard and He didn't want to do it.  But then, of course, He submitted and completed the atonement.  That moment of clarity gave me so much strength.  We can do hard things because He who did the hardest thing is right there with us, pulling us through.

I'm very grateful that Bryce is such an attentive father.  A few weeks ago he'd ordered an EKG monitor to use at home.  On Wednesday evening Elina vacuumed the living room then had to sit down to rest.  I could tell she was struggling so I pulled out the monitor.  Her heart rate had dropped to 48 when it's usually at 100. Bryce emailed the cardiologist the EKG reading and he answered back immediately.  Apparently Elina had gone into complete heart block for a short time.  He wanted us to come up to Primary Children's first thing in the morning to be monitored more closely.  So Bryce headed up first thing yesterday morning.  By yesterday evening the heart block came back.  When it didn't resolve after a few minutes they started prepping for an emergency procedure. Finally after 25 minutes her beat kicked back in so they could put off surgery until morning.  What?? I was not prepared for this and was super mad at first.  How many surgeries can her poor little body handle?  They aren't even going to look at her valve and just put in a pacemaker.  So many questions and more what if's.
This whole time I was in Cedar running around like crazy, feeding the missionaries, going on visits, babysitting my sister's kids and trying to figure out a way to rush up to SLC.  The planes and shuttles had all left for the day.  Luckily my brother, Darren was heading up to SLC in the morning and left early so he could bring me up.
I was nervous to tell Ammon I was going back to the hospital because he's had super separation anxiety since I came home 8 weeks ago.  I told him Aunt Annie was going to come watch him again while I would be gone at the hospital and that he could watch a movie with her.  He got super excited and said he wouldn't even cry when I go.  Well, that was unexpected.  Aaron, on the other hand, cried and hugged me about 30 times before I left.  As I was leaving I picked up my suit case to see a little "I love you" note taped on.  He is such a sweet boy.  He also made sure to give me his bottle of concocted deodorant in case the hospital smells bad. lol
Darren and I had the best talk ever.  We figured it's been thirteen years since we've had a one-on-one conversation. I almost even forgot why I was coming up.  As we pulled into the hospital though reality hit me like a ton of bricks.  Whew, breathe.  It's surgery #4 time.

Trying again!

July 28, 2018

After talking with the surgeon in May we had scheduled a surgery date for June 21st. As the date neared we felt a little unsettled and started researching other options. Scouring articles as far back as the 1950’s, looking into France, England, Canada, Korea and even Thailand. Two days before surgery our surgeon decided to postpone the surgery until we were all on board 100%.

“It's risky heart surgery - how could anyone be 100%??”, we thought.

Although frustrating and confusing, I'm grateful he called it off when he did. My MIL hadn't flown out yet and was able to refund her tickets. Then two days later Elina came down with a cold. She had the runniest nose she's ever had. I don't know how that would have affected her recovery but I'm glad we didn't go through at that time!

Still, we were left with a sinking feeling of ,"Now what??” So I turned back to the temple and fasting, praying and studying my scriptures. One afternoon I decided I was going to use Ammon's nap time to compile a list of all the different surgery options. As I started re-reading the medical articles I felt prompted to just read my scriptures instead. Ignoring the thought I continued. After about three articles of “this went wrong with this many patients and this many died etc. etc." I just broke down. I cannot do this. I can't make a decision that involves my daughter's life! Giving up on the articles, I opened my Book of Mormon and started reading.

I had turned to the story of Nephi and his brothers feeling discouraged that their first two attempts at trying to get the scriptures had failed. They were scared and thought they'd get killed if they tried again. When I read Nephi's response that the Lord is mightier than all the earth. Even if Laban had 10,000 men!! I felt like Heavenly Father was speaking directly to me! If He could help Moses free the Israelites, Daniel calm the Lions and David slay Goliath, He could help the surgeon know how to fix Elina's heart. There's not a single surgeon on this planet who could do it perfectly but God can heal hearts. If we pray with all the faith we can muster, I truly believe our Surgeon can be inspired to know what procedure to use.

I've never had such a strong answer. I walked away from that experience fully confident in God’s power. I know He can heal her if that's His plan but I also feel at peace if it's not in His plan. I'm beginning to view life and death seamlessly interwoven in the glorious tapestry of eternity. Just like Sister Holland said in her talk, “Filling the Measure of Your Creation”, our Heavenly parents can see the top of the tapestry while we can only see the underside. It sometimes looks “particularly jumbled and muddled and unclear” but they know what they're doing and the end result will be glorious!

Third Time's a Charm!

Elina had her first open heart surgery in first grade.  She had her second in second grade.  In third grade, her cardiologist suggested we give her a "normal" year of school without another surgery.  So when fourth grade came along we met again to decide what to do.  At that point we decided to scour the country for a surgeon willing and able to perform a risky/difficult surgery called a left-ventricle ventriculotomy.  Our cardiologist came up with two surgeons he felt were competent enough for the job.  The first surgeon, from Michigan, suggested we wait until the Spring then re-assess.  The second surgeon, from Tennessee, never responded.  After a month or so of waiting, we finally heard that he was out sick - indefinitely.

So, with no other choices, we waited until the Spring.  In the mean time, Bryce had the opportunity to attend a work conference located a few hours away from the Michigan hospital.  We contacted the hospital and set up an evaluation appointment we could fly Elina out for after the conference. In the middle of our plans, our cardiologist called us and said the Michigan surgeon was suddenly unavailable - he was out sick - indefinitely!!

"Are you kidding me!!", I thought.  How are the two surgeons in the entire country who can do this, out sick???  And they're from completely different states! Bryce immediately started researching the top hospitals in the nation.  Calling, emailing and even talking to some of the top surgeons with no luck.   

While all of this was happening, Elina's original surgeon from Primary Children's Hospital moved and a new surgeon took his place.  The new surgeon has done a similar surgery a few times.  As in, less than five times. We were able to meet with him after the heart cath last Friday. (He was super nice and won Elina over with his knowledge of Minecraft!)

He basically said, there's only about 120 pediatric cardiothoracic surgeons in the country and they all know each other pretty well.  Many of them specialize in certain surgeries but there's not a single surgeon who specializes in left-ventricle ventriculotomies. Even if we found someone who'd practiced for 30 years, they might have done the procedure five or six times instead of three or four.  Elina's condition is so rare and the surgery is done as a "last resort" because it can cause scarring on the left side of the heart.  This can cause the heart to weaken or have irregular beats which can sometimes be fatal.  

I once asked what would happen if we just left Elina's heart as is.  She can live a long time with holes in her heart.  But basically, because of the holes, her heart is pumping double the amount of blood to her lungs than normal.  Eventually her lungs would give out and the chances of surviving a double lung/heart transplant is less than 30%. Ack! I feel like we have to choose between the best of two evils. 

The surgeon went on to say that one possible solution is to place a patch covering the entire ventricular septum.  He's never done that before and doesn't know how Elina's heart would handle the surgery.  He can visualize doing the actual surgery but has reservations of the unknown.  He ended the conversation by suggesting we sleep on it for a week. He actually knows both the Michigan and Tennessee surgeons.  He's going to call them as well as one more surgeon to get their opinions if they think the surgery would work or not.  We're going to have a conference call in a couple of weeks to see how we all feel about it.  

Needless to say, it's been a very emotional weekend for me.  I visited the temple on Sat and this morning as well trying to gain some peace and insight into what Elina's future holds.  I felt so many different emotions this morning.  What if these are the last weeks we have with our beautiful little girl.  What if the surgery works but she can never have children because of a weakened heart?  What if we hold off and she has to get a heart transplant in her twenties?  So many what if's.  As I sat and prayed in the Celestial Room I had a strong feeling to ask for the faith and prayers of others.  I firmly believe there is power and strength in people uniting together in faith.  We'd be so grateful for any prayers, fasting, good thoughts, positive vibes, whatever you feel the desire to send our way.  

Elina's, obviously, having a hard time.  She's much more aware of what another surgery means and the repercussions it will bring.  She was so looking forward to a fun and exciting "summer before middle school".  

We did stop by the Rowley's Red Barn in Santaquin to grab a milk shake on the way home though. (To make up for having six teeth pulled!)