Six Months

Six months.  Six months ago this morning we sent our precious, precocious little boy off for his fourth open heart surgery.  We had no idea how long the operation would take, mainly because the surgeon told us Eli's situation just doesn't happen very often and he didn't know for sure how much he would need to do once he "got in there".  So we waited.  And waited.  And waited.  January 21, 2014 was a long day.  Eli was in the OR for over 8 hours.  He was on bypass for almost five hours.  During bypass, the body is chilled (I've never asked how low...some details are better left unknown) and the heart is stopped.  A machine is used to pump the blood so the heart isn't moving as the surgeon operates.  As efficient as the method is, there is no substitute for the real deal and there's a risk of major organs not getting enough oxygen when the body is on bypass.  But what alternative did we have?

After an exhausting day we were told to meet Dr. Abraham in the Family Lounge of the PICU.  That was normal.  When he came in he smiled to see the large group of us who had waited all day (myself, Bryan, Zachary, my mom, my sister, Bryan's mom, dad, sister, and aunt).  And of course we were all wearing our Eli's MVPs tshirts and sweatshirts in various colors.  He told us the operation went well and Eli was being settled in his room in the PICU.  Dr. Abraham was pleased with how Eli was doing and gave us a rundown of the operation.  It had taken him a long time to get through Eli's scar tissue to even start the actual revision of his Fontan.  Everything took longer, but overall Dr. Abraham was optimistic.  He is a man of few words, but he doesn't mislead in any way.  If he was pleased, we knew we could feel the same.  

After another hour or so we were allowed to see Eli.  After his Fontan (the third heart surgery) we thought Eli looked great.  After this revision we thought he looked even better than the last time.  Eli was extubated without problems a few hours later (I had walked downstairs to Subway and when I came back Eli was extubated!).  We were so relieved to see his good color, his good vital signs, and have him breathing on his own.  But that relief was short-lived.  He started having a lot of twitching.  At first we attributed it to the anesthesia (that has happened to him before).  But as the night went on, the twitching increased even with the administration of some medication.  Eventually we knew he was having seizures.  He was also not waking up which is something he had started at this point with his other three surgeries.

I won't repeat everything that happened over the next couple days, but Eli had a lot of exams and testing done.  Finally, they were able to confirm what we and everyone else thought was happening:  Eli had suffered strokes.  One stroke on the left side of his brain and several on the right side of his brain.  The doctors had no guesses what Eli's prognosis would be.  Over the next few days, Eli made a few advances.  He slowly started waking up more.  I had spent many hours in his room praying he would just open his eyes.  His eyes moved around the room but we weren't sure if he could focus on anything.  He fussed and cried.  He was inconsolable at times and we had to guess what his needs were.  Those things, plus all the other frustrating things he was experiencing, were torture, but the worst was just not knowing.  Was this the best he would ever be?  Was he going to improve from this point?  Don't get me wrong, we were so grateful that our little guy was alive (and actually thriving from a cardiac standpoint) but what kind of life would it be?  Would he be bedridden?  Would he walk?  Would he speak again?  Could he see?  Would we ever be able to care for him at home?  An even bigger fear for us, was he the Eli we knew before surgery?  Would that little boy ever be able to show his personality to us or was he gone forever?  It was scary, frustrating, and a blur.

We received lots of support through those times.  Staff from all over the hospital would stop by to see Eli and check on us.  Nurses from the general peds floor came for many visits and gave lots of hugs.  It was hard for them to see Eli like that when they had just spent several weeks with him making him laugh and letting him boss them around.  Often I would catch them wiping away tears as they left.  The Child Life Specialists were always looking for ways to offer help.  One respiratory therapist found out Bryan and I liked purple Gatorade.  The next morning we found a bag with six of them for us.  And of course the messages, emails, and texts from our family and friends was huge.  We weren't able to personally answer a lot of them, but we read them all and cherish the gestures.

The days passed.  Remember those hours I spent praying he'd open his eyes?  Fast forward six months and now I have many times when I feel like a hypocrite for begging him to slow down and go to sleep for a few hours!!!  It's a wonderful feeling!  Not only did Eli open his eyes, he also spoke, he smiled, he laughed, he sat up, he held his head up, he swallowed, he ate, he drank, he walked, he ran, he raised his arms above his head, and many other things.  None of those things have been easy.  We've all worked hard to help get him this far.  He still has a lot of work to do, mostly with that left hand and arm.  But he has come so far. 

None of the doctors were ever pessimistic with us, they were just very honest and said there was a lot of potential damage.  At the same time, they were optimistic with us.  They would often offer stories of encouragement about advances they had seen with other patients.  I don't remember any of their stories having as much recovery as what Eli's had, so I don't know if he's more amazing than their other patients or if they just didn't want to set our bar too high in case Eli's recovery wasn't this good.  Either way, we're grateful for their guidance. 

A large part of Eli's recovery is because he was started in therapies so early after his strokes.  I think he was evaluated and started with physical, occupational, and speech therapies within a week of his heart surgery.  I vividly remember one day when PT and OT were working with him together.  It couldn't have been more than 10 days after his surgery.  Lynn and Erin got Eli to the edge of the bed and then to the floor.  The two of them stood him up and held him there for a few seconds.  It was difficult.  He had no head or neck control, he had no movement on his left side, very little on the right, and he couldn't be held under the arms because he was just a few days out from open heart surgery.  He was very verbal with his dislike for it, but they needed to see what, if any, strength and tolerance he had in his legs.  There wasn't much.  As I watched those two women (who were two of the most instrumental in his recovery) hold him up, I felt faint and was nearly sick to my stomach.  It was a combination of pride for what he'd already overcome, hearing his weak cries without words as we forced him to do something he had no interest in doing, and the realization of how much he couldn't do for himself all hitting me at once.  But I had to get over it quickly and help them get Eli back in the bed.  Because he couldn't be lifted under the arms, it took three of us to get this 35lb+ kiddo back into bed.

Another memory I have was a personal attitude adjustment for me and it came straight from Eli himself.  I work really hard to find the positives in most situations and we've been put in some pretty desperate situations.  However, by this point it was getting tough to stay positive.  It was two or three weeks after Eli's surgery and strokes.  Because of the flu outbreak, the hospital had some very strict visiting guidelines which meant Zachary couldn't visit.  I hadn't seen him for so long and he needed a mommy visit as much as I needed him.  Bryan was with Eli and I was saying my goodbyes.  As I was kissing Eli's cheeks, I was being silly and he smiled.  He SMILED!  It was his first smile since all that had happened and it was incredibly precious.  As I was driving from Indy, I kept thinking about that smile and how it was just as special as his very first smile.  That's when it dawned on me.  Parents are always excited about their child's first smile, first laugh, first steps, and first anything really.  We had all those "first" experiences with Eli and now we were getting to experience them again.  That was the attitude I had to have to encourage Eli through all the pain and frustration he would encounter over the next few months.

Eli spent the next six weeks at Peyton Manning Children's Hospital.  Monday through Friday he had therapy for close to six hours a day.  On the weekend he had about two to three hours each day with therapists plus whatever we could do with him outside of therapy times.  Despite the visiting restrictions because of the flu, he had many visitors from within the hospital.  Even after he was released from his surgeon, Dr. Abraham stopped by about once a week to see how Eli was doing.  Infectious Disease Nurse Practitioner Angie was there almost daily even if the doctor was rounding on Eli that day.  PICU nurses came to see him.  The cafeteria delivery staff (usually women) would go out of their way to come past Eli's room or the therapy gym to see what advances he was making.  Student nurses who had Eli in previous weeks would come see him when they had a free moment from their current patients.  Eli became a fixture in the hallways.  If he wasn't in the therapy gym he wanted to be out and about.  I walked miles and miles around the nurses station, sometimes carrying him, sometimes pushing him in his wheelchair, and eventually he would occasionally walk around the hallways holding tightly to my hand with his right hand.  And because we were there so long, we were able to make some lasting friendships with other patients and their families.  Our two favorites this time around are Maddy and baby Katie.  Both had tough battles.  Maddy has completed chemo and will be starting college in the fall.  This super woman took (and aced!) several college courses while undergoing strong chemotherapy and melting Eli's heart.  Baby Katie fought bravely for a long time and has earned her angel wings.  That's a story I want to share another time because it is one of the most beautiful stories I've ever heard.  Meeting these families and sharing our journeys really helped us. 

Eli was then transferred to Evansville.  I knew St. Mary's was a good hospital, but I was really worried about making the transition.  Mostly for Eli's sake, but selfishly a little for myself.  Immediately we were made to feel at home.  Eli spent just over two more weeks there where he continued to flourish at a rapid pace.  The therapists, nurses, doctors, techs, and other staff were in love with him as well.  I think we'll always consider PMCH our "home" hospital because they have literally seen us through every up and down, but St. Mary's definitely earned their way into our hearts. 

On March 21, exactly three months after Eli's surgery and strokes, we came home.  We were sooo excited and sooo scared!  Eli had major improvements but he still required a lot of care.  He basically needed an adult within arm's reach at all times for the next several weeks.  We continued working with him on our own and he started therapy through our local hospital.  They came to the house and Eli warmed up to them pretty well.  They therapists we had definitely helped make the transition from hospital to home easier for us.  Because of policy change within the hospital we had to switch therapy providers.  Now we use an agency from out of town.  Again I was worried about changing therapists on Eli, but he has adapted well and tries to ignore them as much as he's tried to ignore all the other therapists he's had!

Eli has worked hard.  It's been a struggle for all of us.  We have a lot more to do but we are incredibly proud of where he is now.  The work he has left is a lot of small, detail things that aren't as celebratory as his second first smile or set of first steps, but they are just as important if not more so.  He has to work at straightening out his index finger and thumb on the left hand.  He has to work at grasping things with the left hand.  He has to work on muscle control in the left hand and arm. Countless more hours will be spent doing those things.  Will he get full control back?  We don't know.  He may not.  Early on one of his therapists said usually the most change we see after a stroke happens in the first six months.  I've had that in my head for a long time, as if the condition he's in tomorrow will be it and he won't have anymore advances.  I know that's not true.  I think he will continue to improve.  "Lefty" may or may not recover fully, but we will keep working. 

Eli also struggles with his emotions.  He's very stubborn and cries or screams a lot if things don't go his way.  Some of that could be from the strokes.  Some could be side effects from some of his medicines.  It could be signs of post traumatic stress from all the time he's spent in the hospital versus being a toddler at home.  It could be he's a normal three year old who is pushing our buttons and testing his limits.  Or it could be a combination of all those things.  He used to have night terrors but those have been few and far between for the last several weeks.  Other issues we have to deal with are that he still needs to drink more fluids during the day, we'd like him to eat more so we can decrease or eliminate the nighttime tube feedings, we don't know (and won't know for a few years) how much his vision is affected, as well as a few other things.  He is a lot of work but he is worth every bit of it. 

Thank you to anyone who has had any role in Eli's recovery.  From the dedicated medical professionals to social workers to friends and family and coworkers, thank you for everything.  We also want to express how grateful we are that Zachary is the kid he is.  Zachary is the best brother any kid could have.  He loves working with Eli's therapists during sessions.  He is so gentle with Eli and encourages him to use "Lefty" while they're playing, snacking, using the iPad, and lots of other times.  Zachary is a great role model for Eli and a huge help to us at home.  We really try to let him know how great he is, but I don't think he'll ever realize how much Eli adores him.  We're very lucky to have the family and friends we do who took care of Zachary while we had to be in Indy with Eli.  We're also very grateful for his kindergarten teacher who stayed very informed of what was happening with Eli and would offer extra support to Zachary when he needed it.  Our support system has been vital to us and we are thankful for all of you. 

Since Eli's surgery last April, our life has been filled with one struggle after another.  To get through it at the time, you just do what you have to do.  Now I'm starting to realize how much we've endured and I am starting to feel the effects of the last 14 months.  I am incredibly proud of our family.  We are not perfect but a lot of couples wouldn't have made it through times like this.  We joke that we're just too lazy to get a divorce, but in all honesty, that's never been an option.  We're stuck together even if we don't like it all the time!  And God definitely knew what He was doing when He gave us Zachary and Eli.  I really feel like no other four people fit together as well as we do. 

Thank you for all the prayers.  I am asking that you keep them coming because we know they're working!  God bless you for keeping up with our crazy life and remember to cherish Every Little Beat...