Fontan Surgery Day

It was an early alarm this morning at 4:15 a.m. to get up and be ready to leave for Randall Children’s hospital before 5:00 a.m.  Asher was not too happy when I woke him up, took off all his clothes, rubbed down his chest and back with the cold pre-surgical wipes, then got him dressed in new clean clothes.  He was a bit sad on the car ride in, but by the time he arrived he was awake and happy.  He tried on his Fontan superhero cape that Sisters by Heart sent to him, and then we played a game of Go Fish that Becky and Camille had sent to him while we waited for the nurse to come in.  After he got changed into his hospital clothes and they took his vitals, he took some rides in the cars they had to play with, and he checked out the play room.  He ran up and down the hall with his slipper socks to see how well they kept him from falling.  He was full of energy and seemed very calm and happy. 

       

He wasn’t too excited to drink the versed this time, since he remembered how much he hated the taste last time.  He also had to take some tylenol, so she gave him the versed first, had him quickly swallow, and then gave him the tylenol to wash it down.  It seemed to work, and he quickly smiled and said, “ I can’t taste it anymore!”  Just before 7:30 a.m., the anesthesiologist and the nurse that would be at his side during surgery came in to wheel him to the operating room.  By then he was lying down resting on the bed, and he smiled as we told him goodbye. 

We then sat in the family waiting room for a long time.  Luckily, this waiting room has huge windows and is much more comfortable than the cath lab waiting area (except it’s super cold!).  We got an update just after 9:00 that he was on the anesthesia and they were just beginning the incision, then another update at 11:15 that he was on bypass.  We saw some brief blue skies, so we headed out for a walk to pass the time.  It was freezing, so we stuck to walking around the hospital, but it still felt good to get out.  Just after noon, his nurse called and told us that they were warming his body back up and getting ready to do an echocardiogram. 

Just before 2:00, Dr. Iguidabashian came in and told us that Asher was in the PICU and that we would be able to see him in about an hour.  Everything had gone smoothly.  We were relieved to hear all had gone well, and anxious to go see him.

When we came in to see him a little after 3:00, he was starting to wake up.  He was getting a bit irritated, almost panicky, at his breathing tube, so within about 15 minutes of us being there, they took it out.  He seemed much happier with it out, and although he had to wait to get a drink, he was able to fall back asleep and rest.  He kept opening his eyes, as if it was a big struggle to lift his eyelids, glance at either me or Shane, then close them again and go back to sleep.  He did wake up at one point, started coughing, and threw up a bit, but luckily we caught it all in the suction.  The only bad part was that meant he had to wait even longer for a drink for his dry, parched throat! 

   

First seeing him on the ventilator, then Shane and I each taking turns with standing by him.  He seemed to be reassured when he would peek open his eyes and see us. 

He rested miraculously well the rest of the afternoon and evening.  He occasionally wanted to adjust in the bed, or wanted me to wipe his lips with a wet washcloth, but overall it was a tender mercy that he was so calm and restful  He has been very patient each time he has asked for water and I have had to tell him that we have to wait a little bit longer.  He woke up for a bit at one point, and I read him some Elephant and Piggie books, and it was nice to see him smile and hear him talk a bit about the books. 

 

The heart pillow is for him to hug when he coughs so it doesn’t hurt so bad.

Tonight, he got a nice little sponge bath, new bedding, watched a few shows, and is now falling back asleep for hopefully a good night’s rest. 

As I sit here this evening, reflecting on the day and looking at this sweet miracle of a boy, I can hardly keep back the tears as I reflect on the many blessings and true miracles I have seen throughout Asher’s short life.  I am particularly overwhelmed by all of the people who have reached out to us in love and prayer and service, cheering along right with us throughout this journey.  The chaplain asked us this morning as he came by before Asher’s surgery if we felt like we had a good support system around us, and I almost had to laugh as I thought, “If he only knew!”  The support and love surrounding Asher in this room that has come from all of the prayers and fasting and love of so, so many in Asher’s behalf is almost tangible.  Most of all, we know he has a loving Heavenly Father watching over him from heaven above, and a Savior who helps him and us bear this all.