Celebrating at Sea World

This past month we reached some pretty big goals in the Hanes house.  First of all Ethan celebrated his 6 month heart birthday!  Making it to the 6 month mark without big complications is another small sigh of relief.  I asked after the transplant when we would feel like we could breathe again and was told at the one year mark.  So 6 months is a small sigh but we are that much closer.  Ethan did give us a little scare back at the beginning of May.  Some of his lab numbers were rising and we weren't exactly sure why.  With his labs they watch many things.  A few of the things they watch closely are to see if his other organs are "happy".  One of the risks of transplant is the possibility of having other organs fail due to the toxicity of some of the drugs Ethan is on.  In this particular situation Ethan's liver numbers were high.  The doctors did not seem alarmed, however there was some concern.  With that concern comes the talk of it could be this, this or possibly rejection.  As a parent of a heart transplant kid that is one of the worst words you could possible hear coming from a doctor.  When you hear that word your heart just stops and it's hard to breathe.  Unfortunately, that will always be a word in the conversations we have with Ethan's doctors.  Luckily, we were able to determine that the liver numbers were rising probably due to one of the medicines he was taking.  We were able to confirm that his heart was strong and not rejecting after and echo and his 6 month heart cath.  Such a relief! 

The second celebration, which is what made the Sea World trip, was that Ethan is now potty trained!!!  Since our situation over the past year has been a little crazy it made this task somewhat difficult.  Ethan was on the verge of being ready to start potty training right before he got sick.  We were waiting for Maddison's arrival and then were going to take the next step to potty train Ethan.  So much for our planning!!  Since Ethan was in the hospital so long it was just easier to leave him in diapers then try to potty train him on the Berlin.  Then once we got home, he was just more comfortable in diapers and really didn't care much about going to the big boy potty.  So finally, in April I decided to bite the bullet and give it a shot.  We made the potty chart, got all his underwear out, and started talking about the big boy potty.  Ethan had very little interest.  We even read the potty book and bought M&M's for bribery.  Finally one night when Perry wasn't home I let Ethan run around with no diaper after his bath.  My hands were tied up with getting Maddison ready for bed and I hear Ethan say "oh no" and start crying.  Well, he had gone poo poo on the living room rug.  There was a little more to this wonderful scene but I'll spare you the details.  This really hurt Ethan's ego and the next morning he refused to wear a diaper.  He did have a few accidents and occasionally doesn't get to the potty in time but WOW, was not expecting things to be this simple.  Any ways, Ethan's reward for filling up the potty chart was getting to go to Sea World.


On Memorial weekend we packed the car and headed down south.  We dropped Maddison off with my parents, since her patients would have not lasted at Sea World, and took the boys down to San Antonio.  A few of our concerns with going to Sea World was of course germs, which is an everyday worry for us.  Once you start thinking of germs it's sickening to realize how disgusting public places really are.  Our other concerns were the sun and how hot it might be.  A few of the medicines Ethan is on cause him to be sensitive to the sun, so we have to be extra cautious about him being outside.  God knew we needed a much deserving vacation and special time for our family because it was overcast in the 70's and raining the day we went.  Which also helped scatter the people around and so we were able to keep some distance from the huge crowds.  The boys had a great time and we were all exhausted after the day.  Of course Ethan's favorite things were the ice cream he ate and getting to see the Elmo show.  Ethan was also allowed onstage and took a picture with Elmo and Cookie Monster.  Caden is not a fan of costumes so he wanted nothing to do with taking a picture.  Ethan just grinned and gave Elmo a huge hug!  If the people in the costumes only knew how much that meant to a little boy who has gone through so much!

Tomorrow Ethan will have his 7 month heart cath.  These are always long days but if all goes well he will get the month of July off from caths!!!  He will have one doctor appointment and then he is clear until the end of August.  We could not be more thankful for the gift Ethan has received and how well his health has been.  We constantly are thinking of our donor family and how they lost their sweet angle almost 7 months ago.  God is good!  How can you not believe that when you see Ethan, Caden, or Maddison walking around?  These kids are living proof that God is with us all the time!

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
-Isaiah 41:13

Reliving the Moments

Have you ever had one of those events in your life that you can recall every minute of the day?  And, feel like you can relive it as if it were yesterday?  The past week has been one of those moments for me.  I can remember the exact hours and minutes when things got so scary for Ethan.  I remember feeling like someone knocked the breathe out of me and yet when I remember those moments I still feel like I can't breathe.  I remember praying continually asking God, "why?  Lord please wake me up from this nightmare".  I'm so thankful we are in a much better place this year at this time but it's still so sensitive to think about what was happening last year at this time.  I think at some point you put yourself in survival mode and protect yourself from only seeing what is inside the box and not outside.  Now that the dust has settled looking at what was outside that box, scares me to death!

Here is the timeline as to the events that unraveled this time last year.

Ethan on the airplane on his way to Dallas.

March 28th, 2012 - Ethan was transported to Children's Medical in Dallas from Nevada.  Perry rode with him and I stayed back with Caden and my Mom getting things together to fly out the next day.

March 29th, 2012 - We flew out from Nevada early that morning, and yes we missed our first flight out.  I'll mark that one down for being pregnant.  Once we got to Dallas we started having meetings with the transplant doctors about getting Ethan evaluated for the transplant list.  I remember the doctors saying his heart was "impressive", which is not a word you want to hear from your doctor.  The whole time we listened to the transplant spill I kept thinking, these people are crazy my son does not need a new heart.  I remember sitting in that conference room feeling like I couldn't breathe, then I would catch my breathe only to feel like it was knocked out of me again.  That night I stayed in a hotel with my parents.  Before I went to bed that night I prayed really hard that God could make this all go away.  I remember getting angry with him for letting this happen to my little boy.

March 30th, 2012 - Ethan went in around 8am for a PICC line, which is a basic 30 minute procedure.  The anesthesiologist was discussing the risks of the anesthesia but felt like he had a good concoction.  I think at this point we felt like it's no big deal, Ethan will do great we are not worried.   Perry and I along with my parents headed down to the cafeteria to grab breakfast.  Around 8:40am we headed back up to Ethan's room to wait for him.  When we walked into the CICU there were people running frantically all around.  Then we were approached and asked to head to the conference room because something had happened.  I felt like my legs weighed a million pounds and I couldn't move.  The doctors came in and said that the PICC line had been placed and when they went to move Ethan from the operating table to his bed he coded.  He had been out for 2 minutes and they were able to revive him but were unsure if there would be any brain damage.  I think at this point we were in shock, I felt like I was going to be sick.  Those are not words you ever want to hear from a doctor.  When we got to see Ethan he was connected to so many wires and IV's.  The ECMO machine was sitting in the corner, uncovered and ready to go if needed.  That would be the next step if his heart stopped again.  At this point Ethan was moved to status 1A, and the talks began about trying to put him on the Berlin Heart (LVAD). 

The first night he was sedated

March 31st-April 2nd, 2012 - These days were long and exhausting.  Each day the goals for Ethan were to keep him asleep but not so much his heart rate would drop but not enough to let him wake up.  His heart was way to weak to support any sort of activity if he was awake. This was a little bit of a struggle since he metabolized the meds so quickly, but we had some great nurses who made sure he stayed asleep. Each morning Perry and I would get there for rounds at 7:30am to discuss possible infections and when they felt comfortable putting in the LVAD.  Then we would have to leave because if Ethan heard us or felt us touch him he would try to wake up.  Finally on the April 2nd the doctors decided that April 3rd would be the day to get him set up on the Berlin.

His Berlin

April 3rd, 2012 - So on this day last year, Ethan went back around 7:30 that morning.  I remember watching them wheel "Big Blue" down the hall to the operating room ahead of us.  This was going to be a long procedure even if things went well.  We had lots of family and friends there to help give us support.  My stomach was in knots all day long.  I felt confident that God would bring Ethan out of the surgery with success, he had already brought him back once that had to mean something, right?  A little after lunch that afternoon they put the hospital under Code Black, which means take shelter bad weather.  We spent almost an hour in a closed in room as tornadoes were going through North Texas.  Once we were able to get out we began watching the news to see where all the tornadoes were headed not even thinking of how it might effect our lives.  Around 3pm the receptionist came out and said that our surgeon would be ready to talk with us in about 15 minutes.  So as we are headed to the conference room the reporter on the TV says "I'm in Forney and there is a tornado that is taking out the high school!"  We froze!  Our oldest son Caden was in Forney with some friends.  Are you serious!!!  I have a son in a huge operation and now one in a tornado!  The thought did cross my mind that I might lose both my boys in the same day. but once again God calmed my fears!  Here again I felt like I couldn't move or breathe.  So while we are waiting for the surgeon, we are frantically calling to check on Caden.  God once again put his protection over us.  Ethan's procedure went very smoothly and they were going to try and wake him up the next day, and Caden was safe in Forney.

Easter Sunday

As I reflect on the events of last year I'm so thankful we serve a loving and forgiving God.  I fought him and was angry with him and yet he forgave me and helped me get through some of the most horrific events I've ever been through.  Ethan is sitting hear in my lap as I'm writing this and that is one of God's miracles.  I will always remember today and the events that changed our lives, but most of all I will thank God every day for the 2nd chance we got with Ethan.  Even when I want to pull my hair out because I get the 3 year old attitude, which has happened a lot today I still find a way to hug him and tell him how much I love him!

The boys giving Maddison sugars!

Understanding

So we have now passed the 6 month mark for Ethan being in the hospital.  This has seemed like the longest 6 months of my life.  Never in my wildest dreams would I have thought it would take this long for Ethan to get his special heart.  Through all of this I've continued to have one consistent battle, which is very normal for these circumstances, but yet it's still a battle.  That battle is UNDERSTANDING!  So many times I catch myself asking, "why has it been 6 months and Ethan still doesn't have his new heart".  Why was our time in Nevada so short?  Why is it that my precious kids have congenital heart block and will need pacemakers? Those questions are one's that go through my head on a daily basis.  Lots of times I even pray, God I don't understand.  But he then reassures me not to lean on my own understanding but his.  He has the ultimate plan and I need to rely on him.  Is it fair, no, but I know he has prepared me to handle this and someday I'll look back and understand.

As silly as it may sound, I have struggled with moving from Nevada more than I did when we left here.  Yes, Texas is where our family and friends were but while we were out there I made some really great friends.  I loved the weather, the parks, and the farmers market.  I've often questioned, why would God lead us out there for such a short time.  We knew it was only going to be 3-5 years but why was it just 9 months.  Well, I can now look back and somewhat understand.  When Perry and I made the decision to move out there it was going to give me the opportunity to stay home with the kids and not have to work.  God obviously knew what he was doing because the only way we've been able to manage with Ethan in the hospital, is for me to not have to work. Yes, I do run myself completely ragged but it's for my kids.  I will do whatever it takes to make sure my 3 kiddos have as much normal as possible.

Another simple understanding.  God put us here at Children's because he knew it would be a long journey for us.  The people here are some of the best.  Doctors, nurses, surgeons, child life specialists, the list goes on.  We've been so blessed to have the medical knowledge available here for Ethan.  But it's not just all about Ethan.  Everyone here has taken great care of Caden, Maddison and all our family.  It's not just about Ethan's medical condition but as a family we have to get through this emotional roller coaster.  The support we've received has helped us get through the roughest days.  For example, our child life specialist has allowed us to use the playroom on Wednesday evenings so the boys can have some time to play together.  That's not only therapeutic for Ethan but also for Caden.  They really miss each other.

Does it make sense why my kiddos have this medical condition?  No, but if we weren't constantly watching their heart then Maddison's other heart condition might have gone unnoticed.  Maddison was diagnosed with Long QT syndrome.  Her heart was taking too long to recover between beats which could cause her heart to add an extra beat, which then causes a bad arrhythmia.  We would have never of known if we weren't watching her for congenital heart block.  Now, she has her pacemaker and is on a beta blocker to keep her heart from adding extra beats.  Again, it's a God thing. 

So you may ask, how do you continue to be so strong?  Well, there's a couple of things.  My God is an amazing and wonderful God.  He will take care of us.  He has blessed us with so many things already.  Just spend 30 minutes with Ethan running the halls, and you can see one of his biggest blessings.   One of the many versus I look to is Proverbs 3:5-6, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."  Second, I have no other choice but to be strong.  My kiddos need to know that everything is going to be okay even in the toughest days, we are going to get through this.  Another verse that I found the other day that I have now added to my daily reminders is Psalm 13:5, "But I trust in your unfailing love; my heart rejoices in your salvation."

Yes, this has been a long journey that I hope ends soon with a happy ending but I will wait for that special heart if it gives me the opportunity to watch Ethan go through school, get married, and have kids.  So I ask myself why am I going through this?  God is preparing me for something, maybe this is my ministry to help other families deal with this type of situation.  Maybe it was to minster to others who have been experienced this with us.  I don't know but I will someday see.  

Olympian

Ethan and his gold medal the Drs gave him

Within the past two months Caden and Ethan have started playing Mario Olympics in the playroom. At first I thought this would be another one of toys where they both have about a 2 minute attention span and then on to something else.  Well I was wrong.  This game seems to be the most desired toy to play.  Ethan's favorite events are the hurdles, long jump and triple jump.  He has now incorporated these events into his daily walks around the hospital halls.  He usually does the triple jump and hurdles with just a little leg lift and a "ump".  It's the long jump where we get the arm workout and the nurses trying to keep up with us with "big blue", the Berlin pump.  We had the opportunity to watch a little of the Olympics with Ethan.  He was disappointed that he didn't see any long or triple jump.  As we watched some of the most amazing athletes compete in these games, I began to think about Ethan.  These athletes train for months and even years to accomplish their goal of a gold medal.  As we watch these games we are in awe of their talent.  How much sweat and pain have they gone through to train, all for a gold medal.  What a journey to experience.

Mario and the Gold Medal

Ethan's Beads of Courage

Even though Ethan did not participate in the London Olympics to me he is  an Olympian.  He's now been on the Berlin for almost 5 months.  He has been through quite a bit for just being 2.  His daily routine usually consist of blood draws or as he calls it "pokes".  He then has to have a dressing change which can hurt depending on how they need to clean his cannula sites.  Sometimes they have to dig around the sites to clean and sometimes all they have to do is wash it.  Ethan does all of this just with Tylenol, no morphine.  Each week he has "picture" which is an echo to check the function of the right side of his heart as well as looking at the blood clot that formed around his cannula back in June.  For 3 hours each day he has water pumped into his stomach from the NG tube.  At night he's hooked up again receiving Pediasure or as Ethan calls it "feeds".  All of this and we are also trying to push food down him.  He's the bravest little boy I know.  He talks about home, and wants to know when he can go.  Ethan hasn't stepped a foot outside and felt the wind or the sun since March 20th.  He may not have a gold medal but he has 10 full strands of beads that hang in his room.  Each bead represents something he's had to go through.  I look at those beads and I hurt for Ethan but I have to stay strong for him.  I'm so proud of my little boy.  To me he stands above all with his medals of courage.

Caden and his superhero powers!

I also feel that my two other children are also apart of this Olympic team. Caden has been through so much and not quite understanding everything going on.  At night after his prayers he'll tell me how he misses Ethan and wants him to come home.  I just keep telling him soon.  And Maddison, what a rock star!  She's had to basically live in the hospital since she was born.  Every day I'm up here I drag her along.  She is so easy going and happy no matter if we are at the hospital or home.  God truly blessed me when he gave me that baby girl that could handle the craziness of our daily life.

Maddison playing in the playroom

All this to say, I am truly amazed by the talent of those that represented their countries in the Olympics.  But, I do believe that my kiddos are all Olympians in their own way.  God has given them strength and calmness in the craziest of storms.  He has given all 3 a unique heart that he touches daily.

Decorating cookies together.

 

Sesame Street Party

This is a little late coming but a few weeks ago we had a Sesame Street Party for the boys at the hospital.  Our child life specialist came up with this idea to allow the boys to have time together and to give them something different then just the playroom at the hospital.  The party was so much fun and was way more than I expected. In this post I'm letting the pictures do most of the talking!  The people at Children's are amazing!  They truly treat you as if you were family.  Not that any of this is easy for us but they do make things much easier to deal with. I didn't blog about this but back in June we were able to have a family dinner together just the 5 of us!  Between a few nurses and our child life specialist they were able to arrange a meal for us in one of the conference rooms.  Perry picked the menu of steak and crab legs.  I really thought he was kidding when he told me, but that's what we had!  Again, this place has been great to us!  The people we have worked with will always have a place in our hearts for how they've helped us and Ethan!




Ok, so back to the Elmo party,  We had the party set up in the auditorium there at the hospital.  There were all sorts of games and things to do.  We played pin the tail on Elmo, glued feathers on Big Bird, and decorated cookies for Cookie Monster.  The boys also had a scavenger hunt were they found all sorts of toys.  Our child life specialist really out did herself!  One of the toys they found on there hunt was a set of plastic golf clubs and bag.  In the afternoons we  go play golf in the hallway, well a version of golf.  It usually looks more like baseball with the swing of the club. The boys really had a blast!  



Caden decided to alter one of the games which ended up being the hit of the day.  It was a pool of plastic balls, like we all use to play in when we were young, that he would run and jump in to.  Caden just loved doing this.  Well, monkey see, monkey do, Ethan wanted to join in on the fun.  He would get a running start and then Perry would help him jump into the balls.  As the game went on Perry started dumping the balls on the boys after they jumped in the pool.  Hearing the boys laugh was one of those small things I've missed so dearly during all this.  It can be difficult to find a place for the boys to just play together like they did so many months ago.  So to really see them enjoying themselves together was so wonderful.  I think sometimes it's easy to take for granted the little things like listening to the boys when they played back at home before Ethan got so sick.  Such precious words I sometimes never listened to because I was to busy doing laundry or picking up the house.  

The Wait

3 Biggest Ranger Fans

We have now been on the heart transplant list 103 days. We never dreamed we would still be at the hospital come July. Every day we pray for Ethan's special heart to come soon. We know God has his plan for Ethan but it's easy to slip into the thoughts of not understanding why it hasn't happened yet. When you realize what you are praying for each night is for some other family to lose a child it changes your perspective. It's very difficult to know how to feel and pray for such a horrible situation for one and happiness for another.

This is one thing I've really struggled with, remembering how I felt when Ethan went into cardiac arrest back in March which led to his Berlin. I felt so helpless and all I wanted to do was make things better but I couldn't. Knowing how that felt and the thought of losing a child is something I don't want to ever feel again. So how do you pray for another mother and father to have to experience that? I've talked to several different care team members and doctors at the hospital about this and they have all given different thoughts. Of course, they can't give you a biblical answer but they can hint at things. One of the approaches I was given was to remember life is going to happen and just hope the other family decides to give the gift. So my approach to how I pray is to pray for that family to decide to give the gift and also for peace for knowing they gave another child a second chance.

Daily baseball game in the hallway

The wait has been a very difficult road for us. It's the little things I miss the most.  Most of the nurses think I'm crazy when I mention that I miss doing the laundry, cooking, going to church, family time.  We've been homeless for a little over 3 months now and oh how I would love to have a normal day in our home. Sometimes it's hard to keep your strength when you are unable to go to the one place where you can get the most support, church. Every morning I read my Jesus Calling devotion. It's amazing how God finds a way to tell me what I need to hear. It's been very difficult on Perry and I but I think it's been the hardest on Caden. He's 4 and understands a little of what is going on but not everything. His whole world has been rocked. Within 2 days I took him out of school, gymnastics and away from his home and friends. He still asks when are we going home to Las Vegas. It's hard enough for me to handle this I can't imagine how it is for him.  Sadly he kind of gets left out lots of times. Our focus has been on Ethan and then Maddison came along. I think Caden truly misses having friends to play with. I think most of all he

misses his best friend, Ethan. 


Organ donation is now such a more meaningful part of our lives. It has always been a big thing for me since my dad had a kidney transplant when I was 14.  Now having a child needing a transplant it becomes an even bigger part of our lives. So if you are reading this and have not thought of becoming a donor, I do hope you consider it. 

You can also follow Ethan's story on his Facebook page, "Ethan's Heart Journey". 

Father's Day

Maddison and her Daddy

Happy Father's Day to all the Dad's out there!  I want to tell you about one special father, my husband Perry.  We thought we would be spending this Father's Day celebrating our newest addition, Maddison, but our lives have changed drastically.  Instead, we are spending this Father's Day at the hospital with Ethan praying for that new heart.  So in honor of Father's Day I would like to write about Perry and how he has been one of the most amazing Dad's through our latest adventures with Ethan.

Ethan loves to sit in his Daddy's lap.

When Ethan got sick and was put in the hospital I was 34 weeks pregnant, so it was very difficult for me to sit at the hospital all day with Ethan.  Then once Ethan got transferred back to Texas, Maddison decided to enter this world and I've had to take care of her.  As a mother all you want to do is be there for your children and let them know everything is going to be okay.  I was unable to do that so Perry stepped in.  Perry has been with Ethan almost every night since he was admitted 88 days ago.  He has held Ethan's hand, sang to him, and played silly games just to keep him calm.  When Ethan is scared he calls for his daddy.  Perry always seems to find a way to make a scary situation better for Ethan. Sometimes the hardest thing is to be strong for Ethan when you just want to cry because you know he's in pain or scared.  I've been told that some of the nurses are intimidated  by him, because he expects nothing but the best for Ethan and is not afraid to tell you when something is not done right.

At the doctors office with Caden.

Perry has always been a great dad, whether it was singing songs to the boys before bed time or just helping out.  I never doubted his strength or commitment to our family but the past few months watching him take care of us has been amazing.  There have been several times that Perry has found a way to tell me things about Ethan without giving me the bad details.  It's not that he didn't want to but he knew how much I worry about things, especially my children.  Plus, he didn't want me going in to labor any earlier than I did.  Watching him love on our kids has been so warming.  Even when he is emotionally and physically drained he finds a way to make time for the kids.

He is what keeps our family together and going.  I know I couldn't get through all of this without him.  He is truly a Godly man and I feel blessed to have him in my life.  I hope that one day God will reward him for all the things he has done for our family.  Happy Father's Day Perry!!