Fontan Surgery Day 3: The Good and the Bad

Shane spent the night up with Asher last night, and he had a relatively good night, or at least as much as can be expected when you have to be woken up to take medicine and have your vital signs checked and your pleural caths emptied. He woke up this morning and wanted to walk himself to the bathroom, so that was a good sign.

By the time I came up, he had eaten a tiny bit of breakfast, and he was feeling pretty good. We read a few books, and then he watched some shows while we met with the nutritionist. She went over Asher’s nutrition plan for the next six weeks, which is basically a high protein/low-fat diet. The toughest part is that he is supposed to have 15g or less of fat per day, so we will really have to watch what he eats, avoiding things like cheese, treats and pastries, buttery dishes, etc.  Just after that, someone from child life came by for music therapy.  She gave Asher some drums to play, and she sang some songs like “The Wheels on the Bus” and “Old Mcdonald” while he played along on his drums.  He loved it!

 

They wheeled a Wii-U into his room, and he was excited to race Shane in some rounds of Mario Kart. He ate some lunch (just a few bits of chicken and a few bites of yogurt), and by then he was pretty worn out. He took a nice nap and was able to get some rest.

 

When he woke up though, he was not happy. He couldn’t get comfortable, and didn’t want to try and do anything that might distract him. He also had to go to the bathroom but didn’t want to. The nurse came in and we got him to the bathroom, but then she had to empty his pleural caths and he was already a bit worked up. When he was done, she gave him some oxycodone, but by this point, he was done and didn’t want to take it. I talked him into drinking some, but then he tried to spit some out, started coughing, and then threw up all over everything – his bed, his dressings, his IV, and even in the cords from his central line. It was a mess. She got him all cleaned up and pulled out his IV, feeling it was too hard to clean out the throw up without leaving chance for infection. A couple of hours later, once his cardiologist approved it, they took out the central line. Maybe that was his plan all along! He thought if he threw up on everything maybe they would take some of the stuff out of him.

 

After all of this, he was worn out, and he fell back asleep for awhile. He woke up just as my mom brought the kids up to visit him. I think it was just what he needed! He was happy to see them, and wanted each of the boys to take turns racing him in Mario Kart. He chatted happily with them, and we saw some smiles again on his face.

     

After they left, he felt brave enough to move to the wagon and go out for a ride. We took him to the play room, and he played with the trains and a few other toys. He then wanted to go see the garden, an outdoor patio area on the third floor. We took him down there, and he wanted to get out and sit on Shane’s lap for a bit. It felt nice out there in the evening, a perfect spring evening. He came back in and ate some spaghetti for dinner, and since then has been happily playing Wii with me or with Shane.

           

I sure wish I could take away this pain from Asher, that I could take his place through all of this. It is no fun to watch him have to go through all of this and to see him scared or in pain. I can distinctly remember hearing Sister Carole M. Stephens talk at the Women’s session of conference in October talking about the Master Healer. She tells a story about a young woman named Josie who suffers from bipolar disorder. One day, when she was having one of her days of deepest darkness, when she was at the worst of her mental anguish, her mother sat over her and whispered over and over, “I would do anything to take this from you.” I know just how that mom felt! However, Josie, in the moment when she was convinced she couldn’t take anymore, she says, “A transcendent and wonderful power suddenly overtook my body. Then, with a ‘strength beyond my own,’¹⁴ I declared to my mom with great conviction seven life-changing words in response to her repeated desire to bear my pain. I said, ‘You don’t have to; Someone already has.’” I know that Jesus Christ can not only comfort and sustain me through this, but that he comforts and sustains Asher as well, and I hope that through this trial throughout his life, he will be blessed to understand the power of the Savior’s atonement for him personally. We sure love this boy and are constantly amazed and overwhelmed at his courage and strength through it all.

Fontan Recovery Day 1–PICU and to the Peds Floor

I knew today would probably be pretty hard as Asher came off the morphine that they put in his spine during surgery and began to feel the pain of the surgery more. We did have some sad moments, but also some good happy moments too.

The night was a decent night, with Asher waking up every hour to hour and a half. Sometimes he woke up on his own, and other times he woke up when the nurse came in to do vital signs, to give him meds, or to empty his pleural caths. The worst was that he still couldn’t drink anything, and each time he woke up, he said his mouth was dry and he asked for water. He also had a hard time any time he had to cough, as it hurts his chest. The doctor brought in a heart pillow for him to squeeze when he coughed to help with the pain.

In the morning, around 5:30 a.m., I think just because he was uncomfortable in the bed, Asher wanted to sit up in the chair. The nurse got all of his cords and wires together so that he could move him to the chair. Once Asher stood up to move over though, he realized how much it hurt to move. He got in the chair and then didn’t want to get out. He sat there for an hour and a half, I read him some books, he had an x-ray, and he was finally able to take a few sips of water.

When the nurse shift changed, she helped Asher get back in bed, where she removed his arterial line and his catheter. He seemed to have more pain getting the catheter our than the art line. They also switched over his drainage tubes from big tubes draining to a pump on the floor to small bulbs that just hang from his chest. He tried to rest for a minute, and then child life came in and she brought him by a wii, which he tried to play for a bit but it was hard with only one hand. Shane helped him hold the controller and turn so he could play for a bit.

 

My mom brought Madeleine up to visit, and Asher was happy to see his grandma. I got time for a short run on the treadmill here, which felt good. I played with Madeleine a bit in the lobby, and while we were out there, they moved Asher down to the peds floor.

The peds floor is much more private and a lot quieter. He was pretty tired by the time he got down here, had to walk from his one bed to the other, and then had some more tubes drained. He ate a bit of applesauce, but then he was upset too because he had to cough but it hurts still, but he finally got it out and was able to take a good nap. I took advantage and took a nap too!  His brothers had sent up some fun cards, all on orange paper of course, that we hung on the wall in his room for him to look at.

       

When he woke up, he was feeling the best I’d seen him yet. He blew some bubbles, which is something he is supposed to do to get him taking bigger breaths, and we played a game of bingo with the hospital. Asher was able to just watch it on TV, and cross of the items they read on his card as he watched. He won a bingo in the first round, and so I went upstairs to pick out a prize for him. He was excited to get a Lego junior police and motorcycle set – and the motorcycle was even orange! Shane and I helped him put that together, but by the end he was starting to be in pain more, had to cough more, and was getting tired. His dinner came up then, so we got him to eat at least a little macaroni and cheese, and then he fell asleep after the doctor gave him some oxycodone. The nurse was also able unhook his fluids from his central line since he was drinking enough, so we just have to make sure he keeps drinking.

       

It’s hardest when Asher has those moments of pain or fear.  He is getting more and more tense when the nurses come in the room because he doesn’t want them to do anything to him, and when he is in pain he cries, “Mama! Mama!” over and over which just about breaks my heart.  I have been able to keep it together good for him though, reminding him to breathe when he is sad or in pain, and reassuring him and talking him through the hard parts.  Hopefully each day things will become less and less painful so that he doesn’t fear the nurses coming in anymore, and so he can move around and be more comfortable.  I knew these first few days would be hard! 

 

Asher getting some rest after eating a little macaroni and cheese, and Shane trying to get a little nap in the evening since he’s on night duty tonight. 

Asher rested after eating a bit of dinner, and then got a nice sponge bath, new linens, and some medicine before I headed home for the night.  I left him in Shane’s hands, who was reading him some Elephant and Piggie books before going to sleep.

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.

Fontan Pre-Op Appointment

Asher had his pre-op appointment today for his Fontan surgery.  We began at his cardiologist’s office, where we met with his cardiothoracic surgeon, Dr. John Iguidbashian.  We had been told he might be in surgery, but he had finished in time to meet with us, and we were able to ask some of our questions that we had. He told us to plan on 10-14 days in the hospital post surgery, and that the main thing keeping the kids here after the Fontan is the drainage from their plural cavities.  We had been told that by other people, so we weren’t surprised by that.

Following our meeting with him, at pre-admission nurse from the hospital came and met us to bring us over to the hospital.  She brought Asher a stuffed moose and some pictures to color.  She also put “snowman poop” (numbing cream)mon his arms in the spots were going to try and do the blood draw later.  We headed to the hospital for his x-ray, which he was awesome for.  The technicians were laughing at how diligent and focused he was about holding his breath for the x-ray shots.  He then went for his blood draw.  I was most nervous about this part, but he did great.  They let him sit on my lap, and the nurse pulled up a Clifford episode (one of his favorites) on her phone while they took the blood.  He didn’t even flinch!  The worst part was actually when she then stuck a long q-tip up each of his nostrils for a swab.  He definitely hated that part!

After that, we went to meet with Lynn, the child-life specialist.  She is amazing, and she met with our boys during Asher’s previous surgeries.  She also would come in and sing to Asher and try to keep him comfortable when he was here as a baby and had to have pokes or other uncomfortable procedures.  She took us on a tour of the hospital, and Asher excitedly helped her push the elevator buttons to take us from floor to floor.  He was pretty familiar with most of it since we were here just a month ago for his cath, but he liked checking out the playroom and counting the squirrels on the peds floor. 

       

She also took him to her office, and gave him a small doll dressed in a hospital gown.  She let him draw a face on him, and then she explained to Asher everything that would happen to him tomorrow when he came him, and had him then do that to the doll, everything from the blood pressure cuff and pulse ox monitor to putting in the IV and putting him to sleep with the mask.  She showed Asher on a larger doll the drainage tubes and incision that he would have after surgery.  After she finished, she showed a picture to Asher of several children’s faces with different facial expressions.  She had him point to all the faces that showed how he was feeling about his surgery tomorrow.  He pointed to mad, sad, nervous … but also happy and excited.  (He saw the wii in the corner, and she told him he could play that too while here).  It was good to hear him express all the emotions that I’m sure he is feeling going into this big day. 

We took him to McDonalds for lunch before dropping Shane off at work and heading home.  While he had the expected moments of sadness, he is overall calm and ready for tomorrow.  He came home to some visits from some friends wishing him luck tomorrow, and Shane gave him a Priesthood blessing before bed.  Fontan surgery… here we come!