Heart Surgery #2 and the Journey Following

Ethan was born with a heart defect that required heart surgery 4 days after he was born. The surgery did not go as planned but he put up a good fight and pulled through after cardiac arrest and 21 hours in the operating room. This last week we celebrated his two month birthday! This post is an overview of his second open heart surgery and the week after.

Mommy and Baby Ethan celebrating Ethan's two month birthday!

Wed 8/26/2015
Ethan entered the operating room at 7:30am on Wednesday 8/26 for his second open heart surgery. The anesthesiologist, nurses, and physician assistants spent the first 2 hours getting him prepared for the surgery. The incision began at 9:45am and the surgeon spent 2 hours carefully following the first incision cutting through scar tissue down to the bone. It was very bloody and very difficult. The stainless steel wires in Ethan's sternum bone from the first incision were inaccessible so the surgeon made a new incision in the bone and left the original 5 stainless steel wires. Around 12:00pm Ethan was on bypass and behaving! Ethan was very bloody and the team had to stop the heart to perform the surgery via induced hypothermia. The surgeon did an aortic arch augmentation with a homograft patch and by 2:00pm Ethan was off bypass. At 3:30pm the team was "on skin" sewing up Ethan's chest and he was back in his room around 4:15pm. It was a successful surgery that only took 9 hours - hurray!

Surgery was a success!! Mommy and daddy were SOO happy!!

Thurs 8/27/2015
Ethan restarted Lovenox (blood thinner) after surgery to continue addressing Ethan's sinus venous thrombosis. The sinus venous thrombosis is a blood clot in the brain (in the venous sinus) that prevents blood from draining out of the brain. There are two veins that leave the brain and Ethan's left side has the clot. The brain is amazing and has already compensated for Ethan's clot by directing flow from the left to the right sinus venous to drain from the brain. Ethan has been on Lovenox since 7/21 and patients are usually on Lovenox between 3-6months.

Fri 8/28/2015
Surgeon removed the Central Line from the right side of Ethan's neck which is wonderful because that is one less area of infection.

Sat 8/29/2015
Ethan started feeds with Enfaport. Enfaport is a special formula designed for patients with Chylothorax. Ethan started Enfaport 7/20 after chylothorax was first discovered and has been fed through an ng tube since. He has been off and on feeding according to his heart and lungs. When his heart struggles, the team stops his feeds to reduce the load on the heart to digest the food. When he is extubated and on a high flow breathing support, the team stops his feeds because of the risk of pulmonary aspiration.

Sun 8/30/2015
Ethan was at full capacity and tolerating his feeds. He would only throw up when there was a lot of air in his tummy that needed to be suctioned out but once we did that he did well.

Mon 8/31/2015
The doctors stopped Ethan's feeds in preparation for extubation. He was extubated to high flow breathing support through a nasal cannula. Ethan's arterial line from his surgery was removed from his right arm - freedom! The doctors also stopped Ethan's continuous fentanyl drip which is a pain relieving anesthetic/narcotic. He still gets scheduled pain medication and medicine as needed but they stopped the continuous pain medication which is great because he is more active and awake! :)

Ethan was extubated to high flow Monday August 31st

Tues 9/1/2015
Ethan was having retractions and working hard on breathing. His air flow was too high to start feeds and they were doing mask CPAPs. Cardiologist did an echocardiogram on his heart. The arch repair looked great and the left side of his heart looked better. There was nothing in the echocardiogram that explained why he was struggling to breathe. Doctors held Lovenox (blood thinner) in the morning so the surgeon could remove the pacer wires and right chest tube from surgery. Ethan started showing signs of infection at his incision including redness and a fever. The doctors started him on antibiotics.
 

Ethan all snuggled with his friends. Sid the sloth and Luke the puppy.

Wed 9/2/2015
Happy 2 month birthday! Great grandma and grandpa Ordyna were able to visit and great grandma held Ethan for a couple hours. It was fun to have 4 generations together! Ethan's incision dehisced and started oozing heavily so infectious diseased collected a culture. Ethan was still on high flow and had difficulty breathing.  Respiratory Therapists (RTs) started doing mask CPAP more frequently. He responded well to the mask CPAPs but still had retractions.

Thurs 9/3/2015
The night nurse had to wake me up at 5:00am to say that Ethan was struggling to breathe, his x-ray looked worse, and that she had called the cardiologist who was on his way. The lights were on in the room and people started to pour in. The night nurse was there and then the charge nurse walked in, 3 respiratory therapists came in, 2 x-ray technicians were standing outside waiting, the anesthesiologist arrived followed by the cardiologist. I was just in the corner on my makeshift bed next to my blanket and pillow watching. The RTs drew a blood gas and his CO2 was really high. There weren't any hidden pockets of fluid found on the echocardiogram to describe why he just tanked. They brought in the ventilator and the anesthesiologist prepared his medications. The anesthesiologist recommended that I leave the room but I chose to stay. I couldn't see anything anyways because there were 5 people around his bed but Ethan was reintubated for the fifth time. And that's where we're at. The surgeon removed another chest tube today and his infection isn't oozing as much. The infection looks better and his white blood cell count is down. He hasn't had a fever and the infection hasn't spread so the antibiotics are probably helping. Nothing has come up positive from the culture pulled yesterday but infectious disease wishes they knew what Ethan had so they could narrow the antibiotics. The doctors started Enfaport feeds through the ng tube again since he is intubated and he is now at full feeds. Ethan's blood gas looks tons better and his CO2 is normal again. What's amazing to me is that he isn't on any continuous narcotics with the breathing tube!! He is doing really well - I think he likes the help breathing.


NOW WHAT?!?
Ok, here is my understanding... Ethan's heart is much better and the surgeries were successful. His heart isn't the only issue. He is unable to breathe but that could be because he has an infection. His body is trying to fight off infection and breathe all within a week of a second open heart surgery that occurred less than 2 months after the first open heart surgery. Proper nutrition will help the infection to heal but he hasn't been able to eat because ... well he isn't able to eat my breast milk because of the chylothorax... and he hasn't been able to eat formula because he is struggling to breathe. So, trying to metabolize food, breathe, fight infection, and heal is A LOT for a 2 month old baby ESPECIALLY a two month old baby that went through several periods of cardiac arrest when he was 4 days old in a 21 hour open heart surgery that required the doctors to revive him several times... yeah, what a trooper! Poor baby Ethan! :(

The cardiologists have asked the pulmonary specialists (lung doctors) to join Ethan's care team. Ethan's heart looks good so something else is the issue and it could be the lungs. Ethan's cardiologist believes Ethan will need a tracheostomy but they won't do that until his infection heals. The infectious disease specialist is concerned that his infection might spread to the sternum. The doctors have thrown around doing a wound vac to clear out all the stuff under the incision to get rid of the infection but that would mean opening his skin incision again. If the infection does spread into the bone there are now 10 stainless steel wires (5 they couldn't take out from the first surgery and 5 more from the second surgery) holding Ethan's sternum together which is a great place for an infection to enter and hide. The surgeon would have to open his whole chest up again to try to clear the infection from the bone and then potentially leave his chest open for a bit. The other concern is that this infection is so close to the heart and even the lungs and well... it's just not a very good situation at all.

So now we wait to see what happens. We don't want to open him up again for all the same reasons we didn't want to do the second surgery so close to the first but if he spikes another fever or the infection spreads then we may need to look at opening his chest again. If the infection heals on its own but Ethan still has difficulty breathing we're going to have to do a tracheotomy to help transition to breathing on his own because the breathing tube isn't very good to have long term but that is a surgery too and it is so close to the chest incision so close to his second surgery... the "if, thens" don't look too good. Ethan has been through so much already but there is still a lot more ahead. Today was another set back but Ethan is still fighting! He likes to look around with his big blue eyes. He will respond to your voice. His eyes light up when you talk to him and he is just the cutest kid ever. If he's still fighting, I will too!