Wednesday, December 31, 2014

Goodbye 2014

I am seeing all kinds of posts on Facebook about ending 2014 and beginning a new year.  After seeing those and knowing the kind of year we've had, I feel somewhat obligated to acknowledge 2014.  So here it is:  Good riddance. 

It's difficult to sum up what our year was like.  It actually blended very well with 2013 which was a trying year for us with Eli's 3rd heart surgery, staph infection, multiple pleural effusions, and seven week hospitalization.  Later that year he was hospitalized again due to the staph and again due to seizures that were later determined to be caused by the combination of his infection and a couple of his medications.  Then Christmas morning 2013 he was vomiting.  After a few hours he felt better and started walking a little bit.  That's when we noticed the limp.  Bryan and I both immediately knew the chances of him having a complication of the staph was as likely as a sprain or fracture.  Have you ever prayed for your child to have a sprain or fracture?  We were.  We never said a word to each other about it because we knew we didn't have to.  If it was the infection there would be plenty to talk about once the diagnosis came, so we just continued our silent prayers for an mild-played-too-rough-on-the-couch-injury.  But by December 30 he had developed fever along with the worsening limp.  We were at Dr. Amy's office that morning and by 3:30 that afternoon Eli and I were in a pediatric orthopedic surgeon's office in Indianapolis hoping he saw some fracture on the xray that we'd all missed.  But no.  He saw nothing unusual about the film but did see what we saw when he looked at Eli...a very ill toddler with a fever and a very serious, complicated history of staph infections and heart problems.  He wanted Eli admitted for further work up and said "I hope that doesn't upset you."  I told him that of course it upset me, but I had also come to Indy with a van full of clothes, our laptop, and other supplies because Bryan and I knew something was wrong.  If that doctor didn't admit Eli, I was taking him to one of his other specialists or possibly the ER to get him in and worked up. 

So December 30, 2013 Eli was admitted four a fourth time that year.  Bryan and I rang in the New Year sleeping on a pullout couch in Eli's room.  New Year's Day, the first day of what was supposed to be a new year, a fresh start for our family, the hospitalist on duty that day got the privilege (I use that term with sarcasm) of telling us that Eli's cultures were positive for staph and he would be staying indefinitely while Infectious Disease, Cardiology, and the cardiac surgeon worked out the best plan.  Over the next three weeks, Eli underwent more scans and tests than I can remember as the specialists worked to determine the origination of the staph.  Some were also calling colleagues around the country to get their opinions because what was happening to Eli was not very common.  Friends with hearts in the right places (and whose opinions we value) gently asked if we were seeking second opinions.  Bryan and I discussed it, but ultimately decided the timing wasn't right.  Eli was still undergoing testing and we didn't have a first opinion yet!  Once the results came in and the team was in agreement that the only thing to do was a Fontan revision (total redo of Eli's third heart surgery) along with pacemaker and wire removal, it made sense to us.  What was there was "bad" and needed taken out.  It was pretty simple.  We didn't want to go anywhere else with strangers taking care of our baby.  We were in our second home with people who loved him.  The three weeks prior to that the team had many disagreements among themselves (no, never in front of us and never unprofessional in front of us but we are bright enough to pick up on unspoken disagreements and don't forget that we've known all the parties involved for several years now).  Bryan and I both knew that everyone involved truly cared about Eli (and maybe even us!) and would make the best decision for him. 

So on January 21, Eli was back in the OR for over 8 hours.  Initially his postop recovery was wonderful.  Then he began having seizures.  Then he wasn't waking up the way he should have or the way he had from his previous surgeries.  More testing led to the diagnosis of his strokes.  Not just a stroke, but many large strokes on his little brain.  We spent days not knowing if he would ever have more than the blank stare and occasional cry that we had to guess if it was related to pain, frustration, boredom, or something else.  Then came some "uh-huh" "uh-uh" answers that were appropriate to questions we asked.  Then one night when the respiratory therapist came in to do his breathing treatment he said "Mommy."  I was so excited I didn't even cry about it until a couple hours later.  Even more exciting than that was a couple days later when Bryan was changing movies for him.  Bryan asked "Do you want Scrat?" which is what Eli would call his Ice Age movies.  Eli answered "uh-uh."  Usually his answers would stop with the one word, but this time was different.  After rejecting the Ice Age movie he said "Madagascar."  It wasn't clear, but it was how he had pronounced that tricky word prior to his strokes.  Bryan and I stared at each other for a minute.  That one word was more precious to hear than him saying mommy to me.  It meant he remembered something (however small) that was important to him before the strokes.  It meant he could put the proper word with a thought and express that to us.  Him saying that was probably the single most impressive moment of his recovery because it meant that Eli, our Eli, was still in there and was fighting to get out. 

His fight continued for many weeks after that.  He is still fighting today.  Not only does our son have to fight every day, every hour, every minute with half a heart to lead a full life, he has to overcome the effects of multiple massive strokes.  And he does.  It's a battle that Bryan, Zachary, and I fight right beside him but Eli is our leader.  And we've followed him through all the stages of his amazing recovery. 

I don't remember where Zachary was last New Year's Eve.  I don't know what he wore to school most days of kindergarten or what was in his lunch because I was in Indy.  Bryan had to play single dad with Zachary again and I was thrown even deeper into the world of insurance, care planning meetings, therapeutic assistive devices, new medications, and keep Eli on a very strict therapy schedule.  Zachary had to go through over half his kindergarten year with Eli and Mommy away from home.  But we all did it.  How?  Beats the devil out of me.  What other choice did we have? 

Yes, 2014 had many, many, many good things that I won't forget.  Eli's recovery, the way the four of us have held on to each other, and the news of expecting our third child are our top three favorites.  I won't rank our least favorites because we really don't sit and dwell on all the negatives.  But they have taken their toll on each of us.  I know life for everyone is full of ups and downs.  I'm just tired of our ups and downs being so extreme.  It's exhausting.  I'm tired of seeing how strong my family can be.  So, yes, good riddance to 2014.  We'll never forget and I won't try to.  However, even though I'm usually somewhat of a sentimental sap who thinks time goes by way too quickly, I'm ready to close 2014.  I don't know if I'm ready for what 2015 may bring, but I know we have each other. 

This New Year's Eve we are spending together.  The boys planned our menu last night so tonight's supper was coneys, bbq cocktail wienies, cheese fries with bacon, macaroni and cheese, and brownies.  We washed it down with cherry Kool Aid.  The boys have had their baths and are now watching ridiculous movies while wearing matching pajama pants from Christmas.  We have a bottle of sparkling white grape juice in the fridge (which I've never tried before) and plan on putting our air mattress in the middle of the living room because apparently we're all having a sleepover in the living room tonight.  I dare any of you to top the fun we're having (that is a sincere comment, no sarcasm anywhere in that).  I had this on my mind all day and took a little time away from Despicable Me to get these thoughts out so I can concentrate on my family for the rest of this year. 

Thank you doesn't begin to express our gratitude for everyone who has helped us in any way, big or small, throughout this last year especially.  Please keep us in your prayers.  That's been the biggest help to us.  We appreciate all of you and hope you truly feel that.  We pray each of you has a safe New Year holiday and many more positives than negatives in 2015.  Happy New Year to all of you from all (5!) of us!!!  And never forget to cherish Every Little Beat...

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