31 May 2014

Saturday Morning Update - 2 Days Post Op

Luke had a good night last night, he slept well and woke up around 7AM as a pretty pleasant baby.  The air accumulation doesn't appear to have gotten worse but it also doesn't seem to have gotten better either.  Because it hasn't gotten worse, they have slowed down on the comments about taking him back to the OR and have decided to perform a barium swallow study instead at the point.  It sounds like if there is an esophageal tear, there won't be any intervention necessary as it would be expected to heal on its own... The main concern is that he can't eat until it's healed if that's the issue.  We are just sitting tight for now and don't have much else to report on his condition other than he appears to be doing well aside from the air under his skin.  

We had a super awesome surprise this morning, one of our best friends, Will showed up for a surprise visit!! He over 8 hours one way to get here, from Pennsylvania to see us! We are so blessed to have such awesome people in our lives!!

30 May 2014

Rough Morning

We've had a rough start to the morning. Yesterday's heart repair went great and all is well there. We were told to expect some puffiness throughout Luke's body following him being on bypass. He was extubated last night and afterwards he was doing well so we went out of the hospital, across the street for dinner and a much needed break following a long and stressful day.  When we returned to the hospital, Luke was extremely puffy and his left side was extremely distended, including his chest, neck, back, face and especially his left eye which was swollen shut.  The thought at that point was that it was dependent edema from him sleeping on his left side while we were gone.  The swelling didn't decease and by midnight, they began X-rays to attempt to figure out what was going on.  The X-rays were then repeated at 6:30 and 10:30 AM.  They are showing air under Luke's skin, which indicates that he has subcutaneous emphysema. The emphysema in and of itself apparently isn't very concerning, the real issue is trying to figure out where the air is coming from and why there is a leak.  The plan is to repeat the X-ray this afternoon and if it shows that the amount of air hasn't decreased, he will go back to the operating room under general anesthesia for some exploratory looks inside his esophagus as there is a concern that he may have an esophageal perforation or tear that is allowing air to escape and travel under his skin when he takes a breath. The thought is that damage could have been done to his esophagus during an echocardiogram scope procedure through his esophagus during his heart surgery or possibly when he was extubated last evening.  

With the concern of a tear in his esophagus, he isn't allowed to have anything orally, including medications or food.  Additionally, he has ripped out all of his IVs over the last 18 hours so he was just sedated again and there is an IV tech here now attempting to re-place two IV lines so he can receive medication and fluid to keep him from becoming dehydrated since he can't eat.  He is extremely irritable and "hangry" as we say in our home (hungry and angry) and also seems to be in pain from the heart surgery incision and all of the swelling.  He will likely remain in the ICU through tomorrow, if not longer.  

20 May 2014

Move Outta The Way, PediaSure!

In only 9 more days, Luke's heart will be mended and we will be well on our way to saying goodbye to all this medical formula!!

You know your child's heart condition is becoming serious when you notice that they're no longer gaining weight... that happened for us nearly 6 months ago, just after Christmas.  The temporary solution we came up with was to convert Luke from whole milk, which has 150 calories per 8 ounces to Pediasure, which has 240 calories per 8 ounces.  Today we re-stocked our inventory and now have a very heavy 7 cases of PediaSure lining our shelves. 

When we get home from Boston, hopefully Luke will be transitioning back to whole milk and I'll have more room for canned goods once again!!

13 May 2014

Why We Are Celebrating

The days pass and blur together.  Nervous energy overtakes me at times and I find myself needing to move.  To do something, anything.  Although battling a tough cold, I've still earned substantial satisfaction over the last few days working in the yard and around the exterior of our home... hand scrubbing algae with bleach water from our gray vinyl siding, planting beautiful containers of flowers, digging up, splitting and transplanting perennials, planting 32 asparagus crowns as well as tomatoes and bell peppers, painting lawn furniture and our front door.. I've always wanted a red door...  Last week, I caught myself organizing the items I'd placed on the conveyor belt while checking out at a local big box store - like items together and then by size and color... frantically trying to get it all in order while the belt was moving... the cashier surely thought I was having a major OCD moment!  I had to make a conscious effort at one point during my little episode to place my hands on the handle of the cart so I could resist the urge to keep them busy with pointless filler activity - I'm afraid of how out of control I might be if I didn't have a keen sense of self awareness?  Many of the lists I've made over the last few months have all their items checked off and all I have left to do is pack our bags for Boston.  It's been 21 months since we learned prenatally that Luke would need open heart surgery and over the course of nearly the last two years, I've googled as many combinations of relevant keywords that I could come up with, sometimes repeating the same combinations thinking I just might find something new.  My mind has become so conditioned with a deep need to prepare, to research and to learn about what to expect for this upcoming event that quite honestly I'm a bit afraid of how I'll find enough other things to fill my thoughts once this is all over.  I think back to the days I used to take time to enjoy reading for pleasure and the concept of having strings of hours long enough to pour through an entire series becomes almost mind boggling. 

Soon this season of our lives will be over.  Like most of the things we experience, it will probably become one of those events you reflect on that loses just a little more detail and gains more fuzz with each passing year until it just becomes one small puzzle piece of your past.  That's actually part of why I feel energized and rejuvenated through journaling... it becomes a way to document. A personal way for me to remember so I can grow from experience. A way to force myself to think through the process with logical thoughts.  A way to dig down for organic, self-induced and word inspired peace and hope.  Journaling has also become a way for me to communicate - to what end? I'm not exactly sure...  and surprisingly, it seems that people are actually reading my blog.  I watch the counter continue to tick away and often receive feedback from family and friends about my posts, but sometimes it leaves me feeling awkward.  Exposed.  Even so, I find a need to keep writing.  This experience has blessed our family with such a wonderful opportunity to connect with people in our community we'd never had a reason to get to know in the past.  As I sit in silent reflection about how our lives have been opened to new relationships and concepts, I am overcome with such an intense feeling of love and gratitude... fullness, really.  As I became a mother for the first time, I was awed by the incredible stretching power of the heart to love and that awe was only deepened the second time around.  I didn't know that the heart could expand even further until the last year or so as we welcomed so many new friendships throughout our community.  Even on individual days when there are minutes or sometimes even hours of nervous energy that fills my body, I am comforted by the love and support of our friends - those who have been with us for many of life's adventures and those who are new to our park of many amusements. 

Over the last few weeks, we have been showered with love and support... personal visits, prayers, cards, emails, text messages, facebook messages and care packages have created a sense of celebration in our lives.  After some pondering about what it is we could possibly be celebrating as we stare straight into the face of open heart surgery... it's really pretty simple... FAITH and LOVE are always reasons to celebrate and they fill each day with so much joy!!  Thank you to everyone who has reached out to support our family, we are forever grateful for your kindness!

10 May 2014

Luke's Heart Surgery is Delayed

It's taken me nearly 24 hours to deal with the disappointment we were dealt yesterday, the day before we were set to leave for Boston, when we learned that Luke was battling a cold which would keep him from being a candidate for surgery this coming Tuesday.  Every last detail was ready for us to load up and take off this morning... but instead... we're still here.  I came home from Luke's pediatrician appointment so let down that I crawled into bed at 5 PM yesterday and didn't re-emerge until around 9:30 this morning when I realized that my exhaustion was probably a combination of riding a mental roller coaster full of continual ups and downs, burning the candle at both ends as I attempted to work from home last week while spending the evenings preparing for an extended stay away from home and finally because I too have come down with the same cold that appears to be taking it's toll on our wee little one.  After keeping him in isolation and a near full-out quarrantine for almost one month, it felt so defeating for him to fall ill about 16 hours before we'd leave home to begin our adventure in mending his heart. 

When will his surgery happen, you may be wondering?  Well, we're wondering that same information too...  Apparently his surgeon is currently scheduling into August and September (which sounds about right since we'd had his surgery scheduled since February for May).  We are holding out hope that they will be able to work him in much sooner however, like within the next couple of weeks, althought it won't likely be until sometime next week that we hear from cardiac scheduling with an update.  Until then we just wait and pray for Luke's quick healing from his current illness.

We had friends stop over with a care package for our trip just after we'd returned from the pediatrician yesterday and they reminded us that our plans are not the same as God's plans and we talked about keeping your faith, especially as you face the unknown. We also received a card yesterday in which another friend reminded us of Philippians 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God which surpasses all comprehension will guard your hearts and your minds in Christ Jesus".  It's through the peace that only Christ can bring us, that wait for news to reach us of when Luke will be rescheduled for his open heart surgery.  As we seek some fresh perspective and some distance from yesterday's events, Dustin and I are planning to take to the woods for a few hours this afternoon to hunt for the usually elusive morel mushroom.  I've never found one during any of my half hearted scouting attempts in prior years... maybe today will be my day!

08 May 2014

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!

07 May 2014

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.

02 May 2014

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!