Saving Burke's Life

These past few days have been a complete whirlwind. Here is an attempt at a brief summary.

Sunday, December 7th - Wednesday 10th. Burke was increasingly becoming more fussy - especially at night. He was throwing up, which we just thought was his reflux and that it was not letting up. Tuesday and Wednesday he was extremely fussy. He was beginning to look more blue and was short of breath.

Wednesday the 10th- I called Dr. Walker (his cardiologist in Boise) to get an appointment to maybe get a medication change or something. The office immediately scheduled a ECHO and a chest x-ray for that morning. We knew something was wrong, but when they did the ECHO they found something terribly wrong. What they found was a pseudo aneurysm. When they put the bigger conduit in during his last surgery just four weeks ago, they attached it from the right ventricle to the pulmonary artery. Where it attached to the right ventricle a stitch had come undone or something happened and the conduit began to come apart from the right ventricle. As that occured, blood began to leak out and formed a pseudo aneurysm. Which is a collection of blood that does not have a wall to contain itself, if just balls up in and of itself. (Google it, if that doesn't make sense.) His left lung has also collapsed because the aneurysm was pushing against the space around that lung so the lung just collapses because it could not expand. They were concerned with how long that lung has been collapsed and if it could eventually open back up again. We were admitted to the hospital Wednesday afternoon and prepped to fly down to SLC that night. Burke and I (Rachel) were flown down to Primary's that night for surgery on his heart scheduled for 7:30 am.
Wednesday night- We arrive at PCMC at about 10pm and are admitted to the PICU yet again. At this time Burke is not intubated and only on some pain meds and only had one IV in his foot. He was still very fussy and mad that he had to be in the hospital again and was trying to sit up and climb to me so that I would hold him. We held him as long as we could, but he was still squirmy. I put him back in the bed and his was out in a couple of minutes. They intubated him that night to be able to sedate him properly, because he was very short of breath by then and his sats were way low. He had an okay night. We left the hospital at 1am to get some sleep before surgery in the morning. While I was flying with Burke, Tyler and his mom got us packed and drove down all night long. They arrived here at about 4 am and got a couple of hours of sleep before we had to be at the hospital at about 7am to consult with Dr. Kouretas our surgeon.

Thursday, Dec. 11- He was taken back for emergency surgery at 7:30am. Dr. Kouretas, Dr. Hawkins, and Dr. Kaza (sp?) were all in the O.R. along with about 9 or so other people. Dr. Kouretas said this was a major major surgery and would last 6-7 hours, but we were prepped for the long haul and it ended up being an 8 hour surgery. Dr. Kouretas told us that the surgery overall went fairly well. Here is what the surgery entailed.

They wanted to get him on the heart lung machine before they opened him up to be able to have a controlled environment just in case the aneurysm should burst. So, they used the veins and arteries in his neck to attach him to the heart lung machine. That was a success and then started to open up his chest. That took extra long because there was a lot of scar tissue from the last surgery. Taking out his aneurysm seemed to go as planned and they reattached his conduit to the right ventricle using a homograph (a cadaver's artery). Next was his lung. They drained off all the fluid around his lung and all the debris in there. When they tried to take him off the heart lung machine his lung would not open up and work. They tried multiple times to take him off and were unsuccessful so they had to leave him on the heart lung machine. The transportable equivilant is called the ECMO machine and he was taken to the PICU with his huge machine for a buddy. We were pretty concerned that he still had to be on ECMO because that is full life support. That was our only option until his lung returned to working activity though. They prepped us and told us that he could need to be on ECMO anywhere from a couple of days to a couple of weeks. We already knew that it is not a good thing to be on it for very long. There are definite long term risks from being on it for more than about two weeks. We were terrified that he would need to be on it for a long time. They simple had no clue how long it would take for that lung to inflate and be able to come off the EMCO.

Thursday afternoon-Post op Burke was looking great, not bleeding very much and things looked on the uphill for the first time in awhile. ECMO was running well and not clotting. In order for it to work properly and not clot they have to give the machine heparin- a blood thinner. Since it was in the machine, the heparin would go into Burke's blood stream and his body would not clot at the site of where they did surgery and around his heart. He always comes out of surgery with three chest tubes to drain off the blood that is normal for his body to give off. But about an hour after he came out of the O.R. he started bleeding a TON and would not stop. They were constantly giving him blood to replace what he had lost and did not stop for the rest of the day and into the night. They thought it would let up and tried to reverse the heparin a little but they couldn't in fear of clotting the EMCO. Later that night Dr. Kouretas opened Burke up again to see if there was a unexpected leak or something had gone wrong and went unnoticed in surgery. They did this right in his room in the PICU. He could not find anything wrong. They equated the bleeding to like if you fall off your bike and got a road burn. The scrape would be large and shallow and be bleeding all over the scrape and not just in one spot. The surgery site was just oozing blood, but it would not stop. They said he went through how much blood several adults have in their bodies.

The bleeding did not let up until the next morning when they took him in for surgery, this time in the O.R. They had taken some x-rays post op of his lungs to see if it had inflated yet and it looked good enough to be able to take him off of ECMO. They knew if they took him off of ECMO the bleeding most likely would stop because his body would be able to clot off. They also gave him medications to speed up the clot process. This surgery was a success and his lung tolerated coming off of ECMO really well. The bleeding also subsided FINALLY!

It is now Sunday and I am trying to finish this post. Burke has had almost a complete turn around since the surgery to take him off ECMO. He has been doing great and handling everything really well. They have taken him off of the paralytic so that he can begin to breath on his own and wake up more. He wakes up more often and doesn't d-sat too much, which is a great sign that he is tolerating weans and milestones necessary to get better.

We almost lost our little buddy and we are so grateful to the Lord for keeping him here with us. He was on total life support for about 2 days until his lung could come around and work properly, and we are grateful for the technology to assist in the healing process. We are also grateful for the speed in which he was able to come off life support so he would not have other long term effects from being on it for too long. We are grateful for these nurses and doctors who know exactly what to do. We are grateful especially for Burke and his desire to stay here on earth with us. He wants to live and heal and hopefully in a couple of weeks get out and play! He is a fighter and is so strong with all that he has been through and all he is going through right now. We have a long road ahead of us, but he is getting better all the time. All we need is time, and Heavenly Father has graciously blessed us with more, which we will forever be grateful for.