An Unexpected Journey

So, in my last post I was writing about our journey with our soon to be new little addition Maddison.  Maddison is here but since then we have adventured into a more complex situation.  3 days ago marked our 1 month anniversary for having Ethan in the hospital.  In early March, Ethan started acting like he didn't feel well.  At first I thought it was just a cold or maybe even going through a growing spurt.  Ethan seemed lethargic, he started not eating and just didn't act like himself.  I took him to the doctor and he was treated for constipation.  7 days later on March 20th, he screamed during his nap and wouldn't let me touch him without screaming.  At that point we decided to take him back to the doctor.  The doctor then sent us to the ER with an enlarged liver.  Once at the ER the doctors started talking about a possible issue with Ethan's heart.  This just seemed silly to us because he had the pacemaker and nothing had been detected in any of our previous cardiology appointments. It just didn't make sense to us that it could be a problem but they insisted on doing an echo.  The echo showed that Ethan's heart was only functioning at 20% and basically it wasn't squeezing. Instead it was described as the ventricles were just rocking back and forth.  When the heart is not functioning properly then the liver becomes enlarged, which leads to a backup in the rest of the body causing the constipation.  Ethan was then admitted to the ICU in Nevada that night.  By morning he had lost 3 1/2 pounds of fluid and was acting as if he felt 100 times better. 

The cardiologist that we had been seeing for Maddison were the same doctors seeing Ethan so they were very aware of our family history and my current situation of being pregnant.  After a few days of meds they decided to have Ethan undergo a cardio cath and biopsy of his heart, in hopes they find the cause of his heart failure.  We said fine, and suggested that we try and get Ethan back to Texas ASAP to see our cardiologist there.  On that following Monday, Ethan went for his procedure.  The doctors came back telling us we should probably start looking for a heart transplant program to get Ethan entered in.  So, we immediately started looking, knowing that Children's Medical Center in Dallas was one of our top choices since our doctors were there.  On that following Wednesday, Perry and Ethan were flown on the care flight to Dallas and he was admitted at Children's.

My Mom, Caden, and I all flew in that following Thursday hoping to hear that the doctors could easily fix Ethan and all would be well.  That day after we arrived Perry and I started meeting with transplant coordinators, psychologist, and doctors for our evaluation of getting Ethan on the transplant list.  It was very overwhelming, almost felt at times that I couldn't breathe.  The doctors suggested we put a PIC line in Ethan for a better source for his IV meds.  That next morning, Ethan went in for his procedure.  The anesthesiologist was very nervous about the meds.  He chose a very low dose of anesthesia knowing that Ethan's heart was very fragile.  He explained all the risks and as parents we said ok and felt that everything would go smoothly.  We told Ethan we loved him and they took him into the operating room.  The doctors said it would take about 45 minutes so we went to grab breakfast and then headed back upstairs to Ethan's room.  Once we got upstairs we ran into one of the social workers who had a very paniciced look on her face.  She said something had happened and we needed to meet with the doctors in the conference room.  My heart just sank.  The doctors came in and told us that Ethan's was stable but when they moved him from the operating table to the bed after the procedure he went into cardiac arrest.  He was out for about 2 minutes and they were able to bring him back.  Those are words you never want to hear but especially about your 2 year old son.  They took us to what they called the "fish bowl" and there were about 15 people in there trying to discuss the next step.  Ethan just laid there, he had 12 lines of medicine and was hooked up to a ventilator.  Our doctors assured us he was going to pull through and that they were ready if anything else might happen.  If he had another episode then they would hook him up to the ECHMO, which is a huge heart bypass machine.  If they could hold him off of that for a few days then they would put him on a Berlin heart until he received a new heart but to understand he was in a very fragile state.  The other discussion they had to have with us was about the possibility of brain damage due to his episode.  They felt that 2 minutes wasn't terribly bad but we wouldn't know until he woke up how much damage might have been done.  I have never felt so sick and helpless in my life.  My precious little 2 year old was laying there and I couldn't do anything to help him. 

The next 3 days Ethan was borderline sedated.  It was very hard for us.  If we touched him or he heard our voices he would try and wake up which would cause his heart to work to hard.  Basically, the next few days we spent in the ICU waiting room and would walk back every hour to check on him.  It was so hard not to sit there and hold his hand or rub his head.  How I just wanted to hear him say "Mommy, are you", which was a game we played at home.  On Tuesday, April 3rd Ethan went back to the OR to have his Berlin heart put in.  This is a ventricular assist device that sits outside the body and does the pumping for the heart.  They weren't for sure if they were going to have to put one or two pumps on Ethan until the procedure started.  Knowing how fragile he was just through the anesthesia was very nerve racking.  The procedure took 7 hours, which seemed like some of the longest hours of my life.  Fortunately, Ethan only had to have the Berlin on the left side of his heart, so they felt the right was functioning enough on it's own.  Once the Berlin was in his right side started functioning a little better and he had one lung that was deflated due to the enlargement of his heart.  That lung soon was inflated after the pump was put in. You would think that the surgery alone would have been plenty for us to go through, right!  Well, about the time Ethan got out of surgery the reporter on the TV was reporting a huge tornado going right through Forney.  Well, we had sent Caden to Forney the day before to stay with some friends during the surgery.  Seriously, my 2 year old just had heart surgery and now my 4 year old is in the path of a tornado.  I'm not sure why God thought we could handle another scary situation.  Luckily, Caden was safe and the tornado didn't come close to where he actually was.

Computer hooked up to the Berlin Heart.

 The day after the Berlin was placed they started letting Ethan wake up, and I finally got 

Berlin pump

to hear those precious words of "Mommy are you". Here we are 2 weeks out from Ethan's Berlin and he is doing really good. They moved him to a regular room this past Wednesday on the cardiac floor.  This has allowed us to be together as a family as well as a little more privacy.  The doctors have said that of all there Berlin patients Ethan has progressed the fastest.  He does physical and occupation therapy everyday and musical therapy twice a week.  Each day he gets stronger and wants to walk more.  It's so good to see his personality coming back out and watching him play again.  How we prayed for that those few days he was asleep.  Now our prayers are full of asking for a new heart.  Ethan will be here in the hospital until we receive that phone call that a new heart is on its way.  It's been 23 days since we last sat at the dinner table together or just enjoyed a night at home as a family.  We are now a family of 5 but have spent the last two weeks together in a hospital room. How if I could go back in time I would cherish every last meal and family time we spent together.  I wouldn't of rushed to do the dishes or get the kids to bed but just spent that time together.  My wish is to get this heart soon so we can do that again.  But, I'm so thankful that God has blessed Ethan with his Berlin heart and a great recovery, as well as amazing doctors and nurses here at Children's..  When times have felt like they were the worst possible, somehow God has shown us something great.  We may never know what caused Ethan's heart to fail or why God decided to put us through all this but for whatever reason Ethan can use this for an amazing testimony about how God gave him a special heart.  

First time Ethan met Maddison