22 June 2014

3:39 AM: I can't sleep

3:39 AM: I can't sleep.  I've resigned to do what all crazy people do when they're wide awake in the middle of the night... blog. 

Last night a friend asked me "How are you, really? You seem great, but I wanted to make sure. Are you okay?"  I've been chewing on that question for the last few hours...  By nature I'm someone who generally reflects often and historically I've used the 25 minute commute home from work to consider the day's events...  what went well, what could I have done differently, what needs to be tackled next, mental planning for the evening, review of events upcoming later in the week, etc., etc.  That approach has worked well for me in the past, however considering that I've been off work for a few weeks now caring for Luke, I haven't had that same block of time set aside each day to just think.  My friend's line of questioning was the probing that I needed to spend some time in quiet reflection, even if it did leave me sleepless!

"How are you, really?"
After a few hours of mentally replaying the last few weeks' experiences... my simple response... I'm good!  No doubt, we've been through a roller coaster of emotions the last few years with much anticipation of Luke's heart surgery being the climax.  There was initially so much learning that needed to happen to understand what we were dealing with and then all of the planning to actually get us to Boston was no small feat.  Once we were there though, things took a very natural progression and fortunately everything was orchestrated by the experts in the hospital... the scheduling, the intensive care that Luke required post-op, our housing, etc.  All of the pre-op appointments were scheduled back to back to back the day before surgery so there wasn't much time to think, only time to do.  I recall wondering to myself "is this really happening?", "is tomorrow really the day?"  Luke had been waking multiple times each night in the year leading up to surgery (unfortunately that hasn't changed with the surgery now being complete!) and after a draining and utterly exhausting day of pre-op, I specifically called out to the Lord that night... asking him for a full night's rest for Dustin, Luke and myself.  When we woke the next morning, Dustin's first comment was "wow, can you believe we slept all night?!?"  He gave me a high five after I responded, "I know, wasn't it awesome?  I asked God for that when I prayed last night!"  It's not often that prayers are immediately answered and I took that as a great comfort that morning.  We had to be at the hospital at 6 AM and by 7:30, he'd been taken back and things were set in motion.  There was no turning back.  He needed the surgery to give his body a chance at living a long life, most children who had gone without this repair in prior decades hadn't lived to see ten years old.  As we headed to the cafeteria to grab breakfast and a cup of coffee, I was at peace.  I was comforted by the prayers I knew so many were offering up on our behalf, not just in that moment, but in the weeks and months prior.  On that day in particular, we had no other choice than to "let go, let God".  

The next few days were absolutely exhausting.  Living in a hospital is not fun, sleep doesn't come easy and shared bathrooms are by no means comfortable, but we made it.  The hardest part was seeing Luke uncomfortable during his recovery, he cried out in pain a lot in the days after surgery and when the sedation had been lifted enough that he was more alert, he just wanted to be held... which was cumbersome to do when you had to deal with IV fluid lines, an arterial line, a central line, EKG lines and a pulse ox.  It seemed like just as soon as you'd pick him up and get all the lines untangled so you could sit down, one of the many lines wouldn't be quite long enough, so it'd require working to get situated again and it never failed that as soon as you'd get comfortable, someone would stop in to get vitals, administer meds, etc. and you'd have to start all over.  Additionally, Luke had a very rare post-op complication, Subcutaneous Emphysema.  This is actually so rare that even with Boston being the number one facility for Pediatric Open Heart surgery, where they perform over 1000 open heart surgeries annually, they told us that they see this complication less than one time per year.  Our cardiologist there told us that in her 30-year career, this was her first time to witness this post operatively.  We heard fellows and nurses tell us that it was "perplexing" and "strange".  Fortunately it eventually resolved on it's own, but for the first few days, it was worrysome in that we didn't know where it was coming from (and even after a number of tests, we never definitively learned the source).  

Nine days following surgery we were home from Boston and after a post op check-up in Cleveland went well a few days later, we thought we were home free until we hit another road bump.  Nearly three weeks after Luke's open heart surgery, I noticed his chest didn't look normal when he'd breathe.. he was retracting sub coastally and also jugularly and his incision was protruding about an inch from his chest wall.  When you'd pick him up, you could feel the middle of his sternum grinding... the edges of the bone rubbing together where they'd been separated to allow access to his thoracic cavity during his heart surgery.  We later learned that the medical term is "Sternal Dehiscence", which is often caused by a severe (and can lead to) a life threatening bone infection that becomes septic.  This is a pretty rare complication of open heart surgery and it's said to occur around 2% of the time.  Fortunately, during Luke's emergency sternal reconstruction operation last week, the surgeon didn't find any infection.  He replaced the original heavy gauge sutures with six stainless steel wires to fix the sternum in place.  He's now five days post op and seems to be doing okay aside from being pretty needy. 

As I think back through everything, one concept sticks with me... perseverance in faith even through life's challenges... the more you exercise your faith, the stronger it will become.  This has been so true for me, I cannot imagine how we could have gotten through this otherwise.  Every day, we are witnesses to God's unending love.  Lately, we have felt Him graciously answering our prayers... the big one, getting Luke through a successful heart repair and even helping us through the small stuff like allowing us a full night's sleep the night before surgery.  He has sent so many amazing people into our lives and has re-connected us with others, particularly for me, He has brought one of my favorite childhood friends back into my life and I am overjoyed with the opportunity to get to know her again!  Before we left for Boston, while we were in Boston and even after returning from Boston, we received so many cards and gifts in the mail it was nearly mind boggling.  A friend drive 16 hours round trip to visit us in Boston while family and friends rallied at home to do work around our yard so we could come home to less work.  The way people have surrounded us with love and support has been absolutely overwhelming and has filled me with such an amazing gratitude.  Even on days that life feels kinda tough, I know that I am blessed!

5:42 AM: Signing off and heading back to bed...

15 June 2014

Father's Day 2014

The best father I've ever known in my life.  He shows up.  Participates.  And more than that, he enjoys his children!  Matthew and Luke adore their dad and the list of ways he loves and cares for them is unending!  We love you Dustin!  Happy Father's Day!

04 June 2014

Wednesday Update: Post Op Day 6

Not sure how I've managed to not update this more frequently... That was definitely one of my goals heading into this experience! I'll have to be sure to do a complete report once we're home and I have a solid block of time to dedicate to documenting! We are finally back in Luke's room following his sedated echo this afternoon! He did great with the sedation and we just heard the results of the echo... A "patch margin ASD" remains, but should heal on its own in time and his valve and overall heart function look fine! His surgeon was one of the doctors reviewing the echo today and he was pleased with the results! 

A few fun things have happened for us today... Luke got his official "heart" pillow from the hospital, indicating that he had open heart surgery here, he was chosen for a photoshoot by the hospital's professional photographer and we are hopeful that they will use him on their website and / or Facebook page sometime soon and I was able to make a "Beads Of My Heart" bracelet to represent all of the different procedures and events that we've been through with Luke's heart journey.  I ended up with a string of beads too long for a bracelet so it may become a necklace or a bracelet that I double wrap... not completely sure, but either way, here is a listing of the meanings of each of the beads I was able to pick out...

Hospital Admission (NICU, Observation for Laryngomalacia, RSV, Heart Catheterization, Bronchiolitis, Pneumonia and Open Hear Surgery)
Ambulance Ride
Bath time in the hospital
Chaplaincy Visit
CICU Admission
Clinic Visit
Hospital Discharge
Fluid Restriction
New Diagnosis (Subcutaneous Emphasema)
Pre-op Visit
Starter Bead
Holiday in the Hospital (Christmas in the NICU)
New Baby (with a Congenital Heart Defect)
Visit to the Prouty Garden while admitted to Boston Children's 
Visit to the Playroom while admitted to Boston Children's 
Visit to the Resource Room while admitted to Boston Children's (for parent coffee hour)
Out of Bed!!
Arterial Line
Blood Draw
Central Line
Chest Tube
Chest Tube Removal
Chest X-ray 
Wound Dressing Change
EEG (at Cleveland Clinic)
IV Line
NG Tube (while in NICU at Cleveland Clinic)
Operating Room / Surgery
Pacing Wires / Lines Removed