Today Should Have Been "The Day"

Today was supposed to be the day for Luke's open heart surgery, but due to our surgeon having an international trip extended through this week, Luke's operation was moved to next week.  When things were first rescheduled, I was initially irritated with the prospect of having to re-organize all of our arrangements but now that those things have all been completed (again!), it's been nice to have just one more week as a family before our upheaval to Boston.

There is something else on my mind today and it's the conglomeration of people behind "Team Luke" and also the larger effort I've heard referred to as "Team Taylor".  It is the most absolutely wonderful feeling to have so many caring people in our lives.  For nearly the last two and a half weeks, we haven't gone one day without receiving a care package or card (or two or three) in the mail... items have come to us all the way from Canada, Tennessee and even from all the way across our great state of Ohio.  We've been touched by co-workers, friends and family and even acquaintances from Facebook support groups for families of individuals with Down Syndrome.  Emails, text messages and notifications that we're on another church's prayer chain fill our hearts with love, hope and joy.  I've had a few people make comments to me recently about how "strong" we are or how our "positivity" is admirable, but quite honestly... yes, there may be some of that coming from within our own beings, but it's reinforced and strengthened by the outpouring of love we've received from so many special and amazing people each day.  When you experience something like we have over the last two years... a surprise pregnancy well before your first child's first birthday, learning prenatally that the surprise baby was bringing more surprises in the forms of a major congenital heart defect and a diagnosis of Down syndrome and then the subsequent complexities that come along with him being admitted to the hospital four times in the coming year for issues like RSV, a heart cath, bronchiolitis and pneumonia, you learn to rely on faith or you get crushed by the weight of the world.  I recently had a conversation with a friend who lost her young son to cancer and one of her comments really resonated with me, "When you feel like you have nothing else in the world, you can always count on your faith to get you through the unimaginable"... she was so right...

As I try to make sense of life (which is probably pointless as it's impossible to understand the unique complexities of God's plans), I am comforted by the belief that God has orchestrated something wonderful for each of us.  As I reflect each day and pray each night I know that I have been prepared for where my life is headed... with each experience and each relationship formed, I am being guided to where I am supposed to go.. it reminds me of the poem "Footprints in the Sand" by Mary Stevenson.

One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most,
you should leave me."
The Lord replied, "My precious, precious child,
I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints,
it was then that I carried you."

I can't change the reality of Luke's need for open heart surgery.  It is real and it will be happening in just a few short days... I am, however, optimistic towards the prospect of his heart being fixed and for us to eliminate the challenge that his sweet, pudgy, beautiful little body has to overcome with every heartbeat, which happens about 130 times every minute of every day.  The Lord has prepared us for this event and I know He will be with us every step of the way!

Sedated Echo During Pre-Op

So I didn't realize until this morning when I answered a call from a Boston area code that ended up being a nurse in the hospital's sedation department that Luke would be receiving a sedated echo as part of his pre-op next Monday.  I'm not surprised that sedation is part of the work up, it actually makes complete sense, I was just unprepared for a call from the sedation nurse in advance of next week. 

She and I spent about about 20 minutes discussing Luke's medical history as his diagnosis of laryngomalacia/tracheomalacia will dictate his sedation plan and the medication they will use.  She took the information from our conversation and will use it as she consults with her colleauges to devise a proper plan so they can back into the proper feeding guidelines for Luke prior to the sedation. 

Luke's echo is scheduled for a 10 AM and depending on the sedation plan chosen, the sedation process could start around 9 AM or possibly earlier - regardless of the plan chosen, we are supposed to be reporting at 7:30 am to the cardiac pre-op area. 

The sedated echo will include the following individuals:

• Echo stenographer
• Nurse
• Physician/Cardiologist

I'm waiting from a return call from the nurse today or tomorrow to learn of the feeding guidelines they will be recommending for us to follow to prepare for the procedure.

Boston Children's Hospital Fact Sheet

I continue to research Boston Children's Hospital... only for reassurance that we've made the right decision if nothing else.  Here is a "Fact Sheet" I recently discovered about their heart center.  It offers a great overview of the facility, but also includes statistics around the procedures they perform as well as the outcomes.  The fact sheet states that in 2013, they completed 860 open heart surgeries with a 98.5% survival rate which seems pretty outstanding! 

 

The Beauty of Spring

Springtime has arrived in Ohio!

I spent the weekend working outdoors and it was wonderful! We pulled out the deck furniture and after noticing a number of nicks and scratches to the paint of my vintage glider, decided it was time to apply a fresh coat of paint! After it dried, the vibrant cushions were set back in place and wow, it sure did feel good to sit down for a few minutes to rest, relax and enjoy the serenity of nature. Birds chirping. Warm sun shining. A breeze blowing through the trees... rattling our deep, tenor windchime. Mixed with the scent of our freshly mown grass was the smell of smoke from the burn pile wafting through the air, easing the burden and mental clutter of papers collected and ready to be discarded following some intense indoor spring cleaning. And the dirt under my nails.... there isn't much better during early spring than cleaning out the flowerbeds, sitting beside blooming daffodils, making way for the colorful, petite and fragrant blossoms of summer.. impatiens, petunias and snapdragons, watching the ground as some perennials are already beginning to peek out of the soil and reach for the sun... and the earthy smell of fresh black mulch... I just can't imagine there can be a whole lot more inspiring in life than the wonder of mother nature.

Following our recent celebration of Easter, I couldn't help but spend my quiet time in the flowerbeds thinking about the rebirth and inevitable cleansing that comes with the season of spring. Getting rid of the dead, shriveled and brown leaves to make room for the green life of summer. Letting go of mistakes, burdens and wrong-doings, making room in our hearts for forgiveness and love. Choosing to have faith in the good Lord above and thanking Him for the blessings of every day. Today I am thankful for the beauty and purpose of every single living thing in nature!

Sometimes we all need a gentle reminder of God's Love / Surgery plan update

I haven't written for a while... I've needed some space and have been using much of my free time to think, reflect and to pray.

The last time I wrote, I was feeling anxious about an upcoming conference call with Luke's surgeon.  I felt responsible for making the right decisions and the stress that came with that was a heavy burden.  Shortly after writing here last time, the Lord sent a friend to our home to pray with our family.  During our visit, we read some scripture and he reminded us to trust in the plan that God has for our family.  After our friend left that day, I spent the afternoon reflecting on how we've gotten to this place... how we came to the decision to go to Boston for Luke's repair.  Of the families we'd met throughout the last year who had also traveled from our general geographical vicinity, 11 hours one way, to Boston for open heart surgery.  Those people who came into our lives at different and unexpected times that had brought us their experiences.  Because of their recommendations, we'd been led choosing to go there ourselves.  I truly believe God was guiding our thought process as we learned the complexities of Luke's specific issues and how different facilities were equipped to deal with them in various ways.  Ultimately, I have to give Him credit for leading us to the best place with the surgeon best skilled to make the repair.

With that positive reminder to trust in God's plan, we entered the conference call that evening with our surgeon in good spirits.  He was confident (as you'd expect), yet was still respectful (as you'd certainly hope).  I continue to be amazed at the new things we are still learning each and every time we have a discussion about Luke's heart.  We've talked about many of the same concepts with different people and each time, there seems to be a new twist to how the information is presented.  Considering this was "the guy", "our surgeon", "the man" who will be doing the job, we took his words with high regard and considered them to trump anything else we've heard from other cardio-thorasic surgeons or cardiologists.  Here are the highlights from our discussion:

•  Currently, the plan will be to use Luke's own pericardium (fatty tissue surrounding the heart) to patch the ASD and VSD holes.  They will shave some of the pericardium off around the heart and because they will be using tissue native to Luke's body, there is no risk of him rejecting a patch made of synthetic material.  Additionally, the risk of him developing an infection from a synthetic is also diminished!!  Finally, because the pericardium is living tissue, it will have the ability to fuse and regenerate, making it a great long term solution for the repair.

• One of the most severe risks of the surgery is the potential for Luke to need a permanent pacemaker as a result of the operation.  Apparently, there are microscopic or possibly even invisible pathways where the body's natural electricity runs through the heart tissue, creating a natural pacemaker.  Although it can't be seen by the human eye, it generally runs through the same area in every person - as such, the surgeon just avoids making an incision in that general area.  The catch is that it doesn't always run through the normal place and if it's damaged, it's unlikely that it will repair itself.  As a precaution, Luke will have pacemaker wires placed during his surgery.  My understanding is that it could be 24 - 48 hours until we are certain of whether or not his natural pacemaker was damaged.  

•  The entire operation should take somewhere between 6 and 8 hours although the actual heart procedure will probably only last somewhere between 60 and 90 minutes.  The entire process will include him being fully sedated, the ventilator will be placed and once it's in the airway, Luke will have a small probe inserted down his throat and into his esophagus which they will use to perform an echo cardiogram to take more pictures and video of his heart.  Apparently this will place the probe closer to his heart than a traditional echo and will allow them to get a better idea of what to expect when they enter the heart.  Next his chest will be opened and the lines for the heart lung bypass machine will be inserted into his arteries .  Prior to making any incisions on his heart, the heart will be injected with cardioplegia, a mixture of potassium and nutrients that will cause the heart to stop beating so the surgeon can work in a bloodless environment.  The heart procedure will be completed, his heart will be restarted and they will complete another of the esophageal echos to validate that the repair worked correctly.  Supposing that's the case, they will close him, bring him up from anesthesia and we will finally get to see him!

It's a lot to consider, but we are praying for continued strength to get through the next few weeks!  We have been receiving some wonderful cards of encouragement in the mail over the course of the last week or so and they have been a tremendous help!  I've been putting each of them in a large envelope in our kitchen and have pulled each of them out a few times to read when I've needed encouragement.  I'm also planning to take them along with us on our trip to read in the waiting room and to display in Luke's recovery room!  We've also even received a few gifts for us to use towards and during our trip... we have been so blessed with loving family and friends!  Thank you so much for wrapping us in God's love and helping us during this journey!!

Coloring Easter Eggs

Today is the day that the Lord has risen!  To celebrate, we visited with family today, ate a wonderful meal and colored Easter Eggs! 

Easter Egg Hunting

Today we spent the day with some of Dustin's family.. one of the highlights for the kids was playing outside and searching for Easter Eggs and then of course, eating the chocolate and candies that were hidden inside!