THANKFUL

As we celebrate the month of November for us also comes another new meaning to being THANKFUL!. On Saturday, November 16th we celebrated Ethan's 1 Year Heart Birthday!  It's hard to believe that we've finally reached this 1 year milestone.  In the transplant world, the first year is usually the hardest and that tends to be the year you see rejection.  Fortunately, Ethan had a great year with no rejection and no big hiccups!  This past year has been lots of adjustments but it's all been worth it.  We are THANKFUL!  To celebrate Ethan's milestone we had a Heart Party that was perfect!  With close family and friends there to celebrate it couldn't have been any better!  After the party we released some green balloons and one red balloon to our sweet donor angel in heaven!  Ethan tells people about his heart party and how he has a new heart!  It's so precious to listen to him and then to see the reaction on others faces when they are unaware of his story.  His preschool class had a heart party for him too.  They even made a book that was called "We are Thankful for Ethan", then each classmate wrote why they were thankful for him.  It was precious!  Just another reason we are so THANKFUL for the school he's in and his teachers!

Now to back up a few months,
we had Caden and Maddison's cardiology appointment in September.  At this point we were checking Caden's heart size to make sure it wasn't getting to large.  If you have not been following all three of my kids were born with Complete AV Heart Block.  Caden doesn't have a pacemaker yet, but will someday.  After his appointment in September the doctors have moved his appointments from 6 months to every year unless we see symptoms that his heart can't keep up with his body.  We are so THANKFUL for the good news!  As we know the day will come, the longer we can chug along the better!  Maddison had a pacemaker put in at 6 1/2 months and she also has Long QT syndrome.  We are watching Maddison closely because of the heart failure that Ethan had.  The results we got in September showed that her heart was still going strong!  She will go back in April and if all looks good then her appointments will move to yearly too! 
Another reason we are THANKFUL!!!

As we celebrate Thanksgiving today we are also celebrating another yearly marker in the Hanes home. On November 28th, 2012 we brought Ethan home from an 8 month hospital stay with a new heart!  It was just like bringing a newborn home all over again.  Ethan had never seen our new home.  The last home he remembered was our home in Las Vegas.  The ride home that evening after his long stay is something I will never forget.  Ethan's eyes wide open looking at everything.  Caden was telling him about all the things we were seeing.  When we got home Caden took Ethan's shoes off for him and then gave him the tour of the house!  We had spaghetti, green beans, and garlic bread, which was one of Ethan's favorite meals.  The most amazing thing was how well Ethan just slipped right in and adjusted like he'd been here for months.  We were finally home as a family of 5! Again, another thing I'm truly THANKFUL for!  Hearing the little giggles of 3 kiddos
                                                                 under one roof is such a blessing!  I'm THANKFUL!                                                            
I thank God daily for the blessings he has given us! Our lives are nothing like what I had imagined they would be 11 years ago when Perry and I began our journey as two.  We still face difficult roads but I'm always THANKFUL!  Caden had a Thanksgiving show at his school and then a party we attended.  On the "I'm Thankful for" Turkey, Caden said he was thankful for "My Ethan"!  I'm THANKFUL!! Whether it's the month of November or the month of July I'm THANKFUL!
                                                                                      For we do not know what lies ahead but
                                                                         I will always give Him THANKS!!                                 
Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ. - Ephesians 5:20

Give thanks to the Lord, for he is good; his love endures forever. - Psalm 118:1

Rejoice evermore.  Pray without ceasing.  In every thing give thanks: for this is the will of God in Christ Jesus concerning you.  -1 Thessalonians 5:16-18

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!